I have a 6 year old son named Noah. He was diagnosed with Autism at the age of 4. He is moderate to severe. He is verbal but has limited communication. He also has severe sensory issues along with moderate hypotonia (low muscle tone).
Every time we go to the grocery store, he must have a yogurt or gatorade. We hand it to him, he hugs me and tells me I am "best mommy ever". It doesn't matter if he was having a meltdown a moment before - in that fleeting moment, I just hung the moon. ---- This is autism.
On Christmas morning while my other neurotypical children are ravaging their endless presents, Noah barely opens 2 and is so thrilled and thankful for the 2 he got, he forgets about the other 12 that's sitting there unwrapped. --- This is autism.
It took us years to get Noah to understand manners. He uses every polite word he can even when it's not appropriate. He will tell you 'thank you' when you bump into him sometimes not realizing it's not in appropriate context. But he is proud of himself no matter how 'right' it sounds to everyone else. ----This is autism.
He can't recite the alphabet but can tell you every character and their life role in every super hero show or movie that has ever existed. ---- This is autism.
He can't ride a bike but he can put together a 500-piece puzzle by himself. ---- This is autism.
Noah doesn't understand human emotion and he has limited memory yet will apologize for something he did for weeks straight. ---- This is autism.
You see, there's nothing wrong with the intention of your blog. You are right, us as parents of autistic children sometimes do struggle. I can't tell you the amount of hours and copay spent in a months time. Or the times that I do go for a walk just to regain my sanity. But that moment when I walk in and he's reciting the letters of my keyboard to himself or he tells me 1+1=2 or when he says "I want milk because I am thirsty." is worth it all. We need better services for them YES... we don't need their own city and it's not a national emergency. My son is not severely ill. Actually he hardly ever goes to his PCP for any medical reasons other than to get referrals for his autistic services.
You don't have 3 million children missing. They are real and here... you just aren't listening. Being married with a special needs child is hard but my husband and I have made the choice that we will do it together. If we split, it will have nothing to do with Noah and everything to do with us as a marital couple. I do live moment to moment because I never know what will come next with any of my children. Tomorrow is not guaranteed but right now is. Everything you described was any family with any kind of issue. Life isn't perfect and if I could redo it all... I would do everything exactly the same!
My child lives, we live ... I think you're the one that's merely 'existing'. My son can use the bathroom by himself, eat by himself, and even dress himself. Does he do any of this as well as a typical child his age? Of course not! But you are limiting on what they are capable of because they are capable of so much. I have yet to meet an autistic child who can't feed himself over the age of 4, they aren't physically disabled. I think you're confused on what autism really means.
Sunday, November 17, 2013
Wednesday, August 28, 2013
Light At the End Of the Tunnel!
I felt now would be the best time to give an update on where we are. I won't go into detail of what we've gone through to get here but just know we are here! :) We have been in the Tampa Bay area for 3 months now.
Altogether as a family we are still adjusting to a new area. Things are different across the board here. The older kids love their new school, we are still in love with our new house and beautiful neighborhood. It's the type where your neighbors wave at you, you can ask to borrow an egg, and all the kids get along great. I have been out of training for some time at my new job and I am doing very well. My husband Lonnie is in his 2nd semester and doing wonderful (finished his last semester with a 3.8 GPA!). There are times where I just want to move back to Jacksonville - partly because things are more comfortable and familiar there, and also because I do miss family and friends. However, when I see how far we've come with Noah's services I know at the end of the day we made the right choice for our family.
Noah has been off of his Seroquel medication for over 2 months now. He is doing surprisingly better. His psychiatrist wanted to make sure it was out of his system before tapering him off of his Depakote as well. His plan is to clean Noah's system of all of his psych meds (excluding Clonidine) then adding just one med in its place at a low dosage that will cater more to his autistic needs/symptoms without him being on an excessive amount. He thinks that the amount and type of meds he was on was actually inducing bipolar symptoms that truly aren't there. He ran medical testing on Noah (blood work, EKG, etc.) and all looks normal so that was good to know. We have ABA therapy starting on November 14th for him. He had his PCP appointment today so he will soon have appointments for speech therapy, OT, PT, and his referrals to the neurologist, geneticist, and Autism Center (he will get a full autism evaluation to find out officially 'how' autistic he is). I love the hospital altogether, everyone there is so awesome, and the services and possibilities seem endless! It also helps having 2 insurance plans for him. They are willing to pay for Depends custom to his size, custom stroller for Noah, and a harness for the car to make riding with him safer. I am also trying to get him set up for his 20 hours of weekly respite hours he qualifies for. I still have some way to go but I do see good things just in sight service-wise.
Noah's school ... now that's a totally different story. I do want to say though that I still believe their school system is better than what he was in. I knew that I wasn't going to walk in and all was going to be how it should. It's a process because it deals with an IEP and a public school system. Got it. HOWEVER, I didn't realize we were going to have so many issues in the beginning over things that in my mind shouldn't matter to them. For example: transportation. In Jacksonville, he was picked up/dropped off in front of our house. It was a special needs bus with 2 bus aides and a seat belt harness. Evidently, that kind of transportation is a commodity here. They set his 'bus stop' 0.7 miles from the house which normally wouldn't be an issue but he gets out later than our other kids so Lonnie would be walking almost a mile one way with all 3 of our children, one being our son with Autism who has a tendency to dart off (has limited boundaries of danger) and low muscle tone who has a note from his previous neurologist stating he shouldn't be required to walk more than 100 ft at once. Then I find out it's not a special transportation bus, he will be placed on a mainstream bus with only 1 aide and no harness. I have 3 concerns: he will hurt someone else, someone else will hurt him, or that he will be bullied. Needless to say, Noah has yet to ride the bus and it is eating up our gas like crazy.
The school placed him in a mainstream school in an EBD (emotional/behavior delayed) self-contained classroom. Same thing he had before. I was really frustrated but I knew a spot at a local private autistic school wouldn't open up for some time plus I understood that was what was on his IEP from Jacksonville so they had to honor it. I met with the teacher before school started and she agreed he needed to be in an ASD classroom. We have immediately started addressing this issue to get him into an ASD class, correct the transportation issue, and get OT going on the school level. I am hoping to have an IEP meeting by next week. Whether the school board realizes it or not, we will be having one. His teacher did inform me today that it will be quite awhile to get him moved/placed. The best news is that the autism school somehow moved him up the waiting list and he can start November 1st OR earlier if his teacher is willing to work with me since I can't withdraw him officially from school until October 31st. It's an ABA Academy and I am really looking forward to it. Now I won't lie: if they get his IEP going and can me into an exceptional center then I will go for that but that doesn't look like that will happen. And to be honest, I am so tired of fighting for him an education. My insurance and his scholarship will pay for almost all of his tuition to the private school and things just are simpler. I am getting plus some on the services the school would give through the local children's hospital! The staff just seems way more gung-ho to wanting to help Noah!
Well, this is us and how we are doing. I plan to try to do a Wednesday nightly blog to update!
Altogether as a family we are still adjusting to a new area. Things are different across the board here. The older kids love their new school, we are still in love with our new house and beautiful neighborhood. It's the type where your neighbors wave at you, you can ask to borrow an egg, and all the kids get along great. I have been out of training for some time at my new job and I am doing very well. My husband Lonnie is in his 2nd semester and doing wonderful (finished his last semester with a 3.8 GPA!). There are times where I just want to move back to Jacksonville - partly because things are more comfortable and familiar there, and also because I do miss family and friends. However, when I see how far we've come with Noah's services I know at the end of the day we made the right choice for our family.
Noah has been off of his Seroquel medication for over 2 months now. He is doing surprisingly better. His psychiatrist wanted to make sure it was out of his system before tapering him off of his Depakote as well. His plan is to clean Noah's system of all of his psych meds (excluding Clonidine) then adding just one med in its place at a low dosage that will cater more to his autistic needs/symptoms without him being on an excessive amount. He thinks that the amount and type of meds he was on was actually inducing bipolar symptoms that truly aren't there. He ran medical testing on Noah (blood work, EKG, etc.) and all looks normal so that was good to know. We have ABA therapy starting on November 14th for him. He had his PCP appointment today so he will soon have appointments for speech therapy, OT, PT, and his referrals to the neurologist, geneticist, and Autism Center (he will get a full autism evaluation to find out officially 'how' autistic he is). I love the hospital altogether, everyone there is so awesome, and the services and possibilities seem endless! It also helps having 2 insurance plans for him. They are willing to pay for Depends custom to his size, custom stroller for Noah, and a harness for the car to make riding with him safer. I am also trying to get him set up for his 20 hours of weekly respite hours he qualifies for. I still have some way to go but I do see good things just in sight service-wise.
Noah's school ... now that's a totally different story. I do want to say though that I still believe their school system is better than what he was in. I knew that I wasn't going to walk in and all was going to be how it should. It's a process because it deals with an IEP and a public school system. Got it. HOWEVER, I didn't realize we were going to have so many issues in the beginning over things that in my mind shouldn't matter to them. For example: transportation. In Jacksonville, he was picked up/dropped off in front of our house. It was a special needs bus with 2 bus aides and a seat belt harness. Evidently, that kind of transportation is a commodity here. They set his 'bus stop' 0.7 miles from the house which normally wouldn't be an issue but he gets out later than our other kids so Lonnie would be walking almost a mile one way with all 3 of our children, one being our son with Autism who has a tendency to dart off (has limited boundaries of danger) and low muscle tone who has a note from his previous neurologist stating he shouldn't be required to walk more than 100 ft at once. Then I find out it's not a special transportation bus, he will be placed on a mainstream bus with only 1 aide and no harness. I have 3 concerns: he will hurt someone else, someone else will hurt him, or that he will be bullied. Needless to say, Noah has yet to ride the bus and it is eating up our gas like crazy.
The school placed him in a mainstream school in an EBD (emotional/behavior delayed) self-contained classroom. Same thing he had before. I was really frustrated but I knew a spot at a local private autistic school wouldn't open up for some time plus I understood that was what was on his IEP from Jacksonville so they had to honor it. I met with the teacher before school started and she agreed he needed to be in an ASD classroom. We have immediately started addressing this issue to get him into an ASD class, correct the transportation issue, and get OT going on the school level. I am hoping to have an IEP meeting by next week. Whether the school board realizes it or not, we will be having one. His teacher did inform me today that it will be quite awhile to get him moved/placed. The best news is that the autism school somehow moved him up the waiting list and he can start November 1st OR earlier if his teacher is willing to work with me since I can't withdraw him officially from school until October 31st. It's an ABA Academy and I am really looking forward to it. Now I won't lie: if they get his IEP going and can me into an exceptional center then I will go for that but that doesn't look like that will happen. And to be honest, I am so tired of fighting for him an education. My insurance and his scholarship will pay for almost all of his tuition to the private school and things just are simpler. I am getting plus some on the services the school would give through the local children's hospital! The staff just seems way more gung-ho to wanting to help Noah!
Well, this is us and how we are doing. I plan to try to do a Wednesday nightly blog to update!
Thursday, May 30, 2013
St. Pete ... HERE WE COME!!!
We're relocating to outside of Tampa! I've been waiting for over a month to post this. I didn't want to give confirmation before it's official. I have a job and a reservation for Noah at a school so I feel it's official. There are many reasons as to why we are making this move (I believe the sheet Lonnie and I made when we were still in the 'deciding process' was 2 pages long). I figured the best way was to compare the areas.
1. Jobs: I started job searching back in February, I applied everywhere I could find which consisted of 4-5 places. Only one called me in for an interview in which a week after my hire date ended. At that point, we had already started making plans to possibly relocate but there wasn't anything but I could apply for anyway.
I applied for 30-40 jobs in the Tampa area; I could have applied for more but I was exhausted from doing the application process repetitively. Also, the calls/e-mails started to roll in. The job selection seemed endless for call center jobs. The best part is that most of them were in the location I was planning on residing.
2. Location/Gas Money: We lived in the area we did because the schools, lower rent, and the crime rate was much lower. However, living in that area meant that any job I got would be in Jacksonville (there were only 2 call centers in our area; I've applied to both numerous times). The distance of driving to Jacksonville combined with the horrible gas mileage of our Explorer resulted in paying an average of $500 a month in gas. Going to the beach from our area was over an hour drive. If we wanted to do the few things Jacksonville had to offer (the zoo, Adventure Landing, Shipwreck Island, or ... well, I think that's it) it was an hour drive also.
Even if most jobs hadn't been in the area we were looking to live, Tampa is only a 20 minute drive. With the jobs being in my area, I'll be paying a 1/4 of what I was before, a monthly saving of $375. The jobs, schools, housing, hospitals, doctors, and services for Noah are all in the same proximity. We're only 15 minutes from the beach, and activities in the Tampa area are less than a 30 minute drive. The activities consist of the zoo, aquarium, Dinosaur World, Celebration Station, Busch Gardens, and Adventure Island. Attractions that are slightly over an hour away or less is Disney World, Sea World, Legoland, Universal Studios, and Islands of Adventure. I'm sure there are more things I haven't discovered yet. I'm constantly learning new things we can do as a family. I love that a lot of them offer annual prices at a very low rate! Fun all year long :)
3. Doctors: I've had to switch the older kids' pediatricians multiple times due to offices not accepting their different insurance plans, location, or a bad quality of doctors. I switched Danielle 4 times in 7 years! The 1st switch was due to the doctor telling me even after Noah's tests/evaluations that there was nothing wrong with him, rather it was my parenting. The 2nd one told me that I couldn't bring Noah to appointments even though I had no child care, the 3rd one I absolutely loved but he was over an hour away so I'd just end up taking her to the ER which seemed pointless and costly. The last one had me wait over 3 hours just so she could be rude to us; I'm a firm believer in bedside manner. I can fake politeness and I believe anyone else especially in the healthcare field should be able to as well. While it wasn't a deal breaker, I knew I wasn't going to keep a rude pediatrician that my children disliked for the rest of their childhood years even if we had stayed.
I haven't been to this new pediatrician's office so I can't vouch on how great it is but I can say that my friend has had this doctor since her children were born (her oldest is 8) and she loves their office. I can say when I called and explained that I had a child who is autistic and bipolar in which they usually have to have separate pediatricians, she explained that they have a pediatrician who specifically deals with special needs only but if they have siblings who are neurotypical, he's willing to take them on as well. The office takes all of my children's separate insurance plans. I did research him and he got 5 stars across the board!
4. Noah: First off, contrary to what some select individuals believe, Noah is the primary reason we're moving. I've heard it said there are plenty of autistic children that thrive in the area. We're not doubting that. I'm sure they have great services for autism. Unfortunately, after 2 years of trying, that is not the experience we have had. Some forget that our son is bipolar and autistic so it's not cut and dry when it comes to services. For everyone thinking I'm moving just to move, be near my BFF, or there are all these services that I just don't utilize or try: just stop! I've researched resources/services until I'm blue in the face. I'm given lies, the run around, and empty promises. I don't feel anyone would be able to find more services than his doctor, case workers, teachers, and his obsessive mother. Noah's case worker flat out said that if they put autism as one of his diagnoses, they will refuse services to him. Yes, the autism diagnosis that is on his medical file. It's upsetting, disrespectful, and frankly hurts my feelings to hear someone say that the reason we can't find services is because we haven't allowed said person who has no connections nor a special needs child to look for services. Not to mention, I've had certain individuals try to help but the services they referred us to a year ago were a dead end. So to pretend like I've ignored these services so I could say "Hey! Let's move to Tampa, they have better services!" is just ludicrous. When I decided to move to Texas, we didn't make up a story, there's no difference here. I certainly wouldn't be throwing my special needs child under the bus to justify it. The private school options there are worse than the public school ones. The autism schools won't accept him due to him primarily being bipolar. To make it worse, what most schools offer is half school/half home school to cut down on costs for parents but even after the scholarship, we'd still have to fork out $3000-$4000 every school year to deal with more issues than we do with the public school system! Maybe, just maybe... both my husband and I are tired of fighting a fight we know we will never win here. I will not allow my son to get less than adequate services for your well being. To sum this all up: I'm not going to allow you to rain on my parade. If you cannot be on board and supportive for something that is better for our family then simply do NOT be in our life.
*School
Last year Noah didn't run into as many issues but he was in an autism-based class. At his IEP last year, they changed his placement to EBD (emotionally/behavior delay). His teacher told me last week he's not EBD though. I had a FISPIT meeting (a meeting we must have before he's approved for any services) in September. I explained Noah had already missed 70% of school from medication changes, behavior, or the teachers constantly calling for early pickup. That's when it was explained the teachers need to go through the proper documenting process for suspension. However, it continued happening. The problem with that is there is no paper trail of his academic problems of staying at school. After he has had 10 suspensions in a school year, they're required by federal law to place him in a more restrictive environment. If this policy had been followed, Noah would have 20+ "suspensions". There are 4 students in Noah's classroom including himself. There is one teacher and 2 aides; Noah usually has an aide/teacher by him but if another student needs help, they can no longer be by him and that's usually when disaster ensues. The area won't provide for one-on-one aides with no exceptions. His teacher informed me that there is no restrictive environment. What that means is that if they had followed proper suspension policy, they would be violating state law more than they already have. His teacher has told me countless times she doesn't know what to do with him and in all her years of teaching she's never had a child this severe. She was actually relying on him being admitted to a residential treatment center which isn't happening. She has just now last month told me that Noah is barely eating his food and refuse to accommodate to a GFCF diet. Their idea of a "cool down" room is a padded room the size of a closet with no window or anything. They have no crisis plan to try to keep him at school. Their Physical/Occupational Therapist observed Noah and agrees he definitely needs OT and PT but they say his IQ (82) is too low to qualify for it. Yes, you read that correctly. My son can't receive needed occupational and physical therapy because his IQ is not high enough. They have a PT/OT (same person) who isn't a part of the school's staff but comes in a few hours a week. Same thing with their therapist except the therapist he was supposed to have back in September has only been to the school twice when Noah was supposed to be receiving counseling/therapy on a weekly basis and he has never seen her. He has never made it past the initial appointment with any therapist ever. He's "seen" approximately 5 therapists. That is 5 chances this area has had to give my son the services he desperately needs but didn't. He also needs ABA therapy but there isn't a provider here that will accept his insurance. They have been promising an in-home behaviorist for over a year now but nothing comes out of it. The only hospital in the area that will accept him is a county-funded one, he went there in September and I refuse to send him there again. They told him that it was a school and if he wasn't good, he'd never see his mommy or daddy anymore. It made him terrified of going back to school, created a huge fear for hospitals which he loved before, and for 2 months following he had massive separation anxiety. We'd have to drive to Tampa anyway the next time he needs an inpatient stay or residential since there's only one residential center in the Jacksonville area which stays full most times.
The new area's public school system has schools that are specifically for special education. They have an entire school that is devoted to EBD (emotional behavior disorder) with an autism class inside so it caters to both needs. They give PT, OT, behavior therapy, counseling, speech, and much more on site without the child having to take off from school to go to other specialists. Their therapists are a part of the staff, not contracted to come in a few hours a week. They will accommodate any diet and even has a dietician on staff. In this new area Noah actually qualifies for 60+ hours of services a week. We will qualify for 20 hours of respite care a week, he has a daycare that only take special needs children (there was no daycare that was even specializing in special needs, they always told me they would "try it out"). The best part is they also have an autism center that is linked to his psychiatrist's office. I am not even technically moved down there yet (we leave tomorrow afternoon) and I already have 3 organizations working with me to get him signed up for all the services he will need. We have 5-6 psychiatrist hospitals to choose from that will take his age range and 4 residential treatment centers. There are literally 20-30 psychiatrists I could go through that accepts his insurance then when my benefits start July 1st with work, it will widen even more. In Jacksonville, I have TWO psychiatrist to choose from. One is by me, the other in Jacksonville.
5. ASHLEY: I'm sure many of you have good friends but I honestly believe she tops any BFF cake. I met Ashley 8 years ago: Dani was a baby and Ashley was a pregnant teen. To pass time of Lonnie's long shifts I created an online teen parenting group. There were 500+ members and Ashley was one of them. We still stayed in contact even after I closed the group constantly chatting and leaning an ear when needed. She was even the first person to know I was pregnant with Noah! A few years later, we finally decided to meet in person. One might think it'd be awkward meeting an online friend but it was natural and easy for us. She was great with Noah and never mentioned his obvious developmental delays. I didn't know it then but that was the start of our growing friendship. She was there through the diagnosing of Noah. She always knew what to say and if she didn't, she said nothing. She'd let me talk endlessly about everything and nothing. She never judged and she became the person I went to because I knew no matter the issue, she'd be there. Last year she drove 4 hours for the kids' birthday party. Noah was at one of his worst moments; he was completely manic, impulsive, and out of control. You couldn't tell from Ashley though. She acted like I do when Noah is having a meltdown: she didn't skip a beat. A lot of people at the party thought she had been around Noah a lot. Nope, this was the first time since he was a baby! For the first time in years, I felt like I had a true friend. She stayed until the party ended and helped me clean up. Since then we have been virtually inseparable. I won't post how much we talk because it's a little embarrassing but let's just say it's a lot. If it wasn't for her, this move wouldn't be possible. I've never had a friend who was so loving, kind, and generous. When my friend Charles died in 2010, I swore I'd never find a friend comparable to him. While I'm not going to compare, I will say sometimes I feel he brought us closer to say "Stephanie, you deserve someone to trust in again".
1. Jobs: I started job searching back in February, I applied everywhere I could find which consisted of 4-5 places. Only one called me in for an interview in which a week after my hire date ended. At that point, we had already started making plans to possibly relocate but there wasn't anything but I could apply for anyway.
I applied for 30-40 jobs in the Tampa area; I could have applied for more but I was exhausted from doing the application process repetitively. Also, the calls/e-mails started to roll in. The job selection seemed endless for call center jobs. The best part is that most of them were in the location I was planning on residing.
2. Location/Gas Money: We lived in the area we did because the schools, lower rent, and the crime rate was much lower. However, living in that area meant that any job I got would be in Jacksonville (there were only 2 call centers in our area; I've applied to both numerous times). The distance of driving to Jacksonville combined with the horrible gas mileage of our Explorer resulted in paying an average of $500 a month in gas. Going to the beach from our area was over an hour drive. If we wanted to do the few things Jacksonville had to offer (the zoo, Adventure Landing, Shipwreck Island, or ... well, I think that's it) it was an hour drive also.
Even if most jobs hadn't been in the area we were looking to live, Tampa is only a 20 minute drive. With the jobs being in my area, I'll be paying a 1/4 of what I was before, a monthly saving of $375. The jobs, schools, housing, hospitals, doctors, and services for Noah are all in the same proximity. We're only 15 minutes from the beach, and activities in the Tampa area are less than a 30 minute drive. The activities consist of the zoo, aquarium, Dinosaur World, Celebration Station, Busch Gardens, and Adventure Island. Attractions that are slightly over an hour away or less is Disney World, Sea World, Legoland, Universal Studios, and Islands of Adventure. I'm sure there are more things I haven't discovered yet. I'm constantly learning new things we can do as a family. I love that a lot of them offer annual prices at a very low rate! Fun all year long :)
3. Doctors: I've had to switch the older kids' pediatricians multiple times due to offices not accepting their different insurance plans, location, or a bad quality of doctors. I switched Danielle 4 times in 7 years! The 1st switch was due to the doctor telling me even after Noah's tests/evaluations that there was nothing wrong with him, rather it was my parenting. The 2nd one told me that I couldn't bring Noah to appointments even though I had no child care, the 3rd one I absolutely loved but he was over an hour away so I'd just end up taking her to the ER which seemed pointless and costly. The last one had me wait over 3 hours just so she could be rude to us; I'm a firm believer in bedside manner. I can fake politeness and I believe anyone else especially in the healthcare field should be able to as well. While it wasn't a deal breaker, I knew I wasn't going to keep a rude pediatrician that my children disliked for the rest of their childhood years even if we had stayed.
I haven't been to this new pediatrician's office so I can't vouch on how great it is but I can say that my friend has had this doctor since her children were born (her oldest is 8) and she loves their office. I can say when I called and explained that I had a child who is autistic and bipolar in which they usually have to have separate pediatricians, she explained that they have a pediatrician who specifically deals with special needs only but if they have siblings who are neurotypical, he's willing to take them on as well. The office takes all of my children's separate insurance plans. I did research him and he got 5 stars across the board!
4. Noah: First off, contrary to what some select individuals believe, Noah is the primary reason we're moving. I've heard it said there are plenty of autistic children that thrive in the area. We're not doubting that. I'm sure they have great services for autism. Unfortunately, after 2 years of trying, that is not the experience we have had. Some forget that our son is bipolar and autistic so it's not cut and dry when it comes to services. For everyone thinking I'm moving just to move, be near my BFF, or there are all these services that I just don't utilize or try: just stop! I've researched resources/services until I'm blue in the face. I'm given lies, the run around, and empty promises. I don't feel anyone would be able to find more services than his doctor, case workers, teachers, and his obsessive mother. Noah's case worker flat out said that if they put autism as one of his diagnoses, they will refuse services to him. Yes, the autism diagnosis that is on his medical file. It's upsetting, disrespectful, and frankly hurts my feelings to hear someone say that the reason we can't find services is because we haven't allowed said person who has no connections nor a special needs child to look for services. Not to mention, I've had certain individuals try to help but the services they referred us to a year ago were a dead end. So to pretend like I've ignored these services so I could say "Hey! Let's move to Tampa, they have better services!" is just ludicrous. When I decided to move to Texas, we didn't make up a story, there's no difference here. I certainly wouldn't be throwing my special needs child under the bus to justify it. The private school options there are worse than the public school ones. The autism schools won't accept him due to him primarily being bipolar. To make it worse, what most schools offer is half school/half home school to cut down on costs for parents but even after the scholarship, we'd still have to fork out $3000-$4000 every school year to deal with more issues than we do with the public school system! Maybe, just maybe... both my husband and I are tired of fighting a fight we know we will never win here. I will not allow my son to get less than adequate services for your well being. To sum this all up: I'm not going to allow you to rain on my parade. If you cannot be on board and supportive for something that is better for our family then simply do NOT be in our life.
*School
Last year Noah didn't run into as many issues but he was in an autism-based class. At his IEP last year, they changed his placement to EBD (emotionally/behavior delay). His teacher told me last week he's not EBD though. I had a FISPIT meeting (a meeting we must have before he's approved for any services) in September. I explained Noah had already missed 70% of school from medication changes, behavior, or the teachers constantly calling for early pickup. That's when it was explained the teachers need to go through the proper documenting process for suspension. However, it continued happening. The problem with that is there is no paper trail of his academic problems of staying at school. After he has had 10 suspensions in a school year, they're required by federal law to place him in a more restrictive environment. If this policy had been followed, Noah would have 20+ "suspensions". There are 4 students in Noah's classroom including himself. There is one teacher and 2 aides; Noah usually has an aide/teacher by him but if another student needs help, they can no longer be by him and that's usually when disaster ensues. The area won't provide for one-on-one aides with no exceptions. His teacher informed me that there is no restrictive environment. What that means is that if they had followed proper suspension policy, they would be violating state law more than they already have. His teacher has told me countless times she doesn't know what to do with him and in all her years of teaching she's never had a child this severe. She was actually relying on him being admitted to a residential treatment center which isn't happening. She has just now last month told me that Noah is barely eating his food and refuse to accommodate to a GFCF diet. Their idea of a "cool down" room is a padded room the size of a closet with no window or anything. They have no crisis plan to try to keep him at school. Their Physical/Occupational Therapist observed Noah and agrees he definitely needs OT and PT but they say his IQ (82) is too low to qualify for it. Yes, you read that correctly. My son can't receive needed occupational and physical therapy because his IQ is not high enough. They have a PT/OT (same person) who isn't a part of the school's staff but comes in a few hours a week. Same thing with their therapist except the therapist he was supposed to have back in September has only been to the school twice when Noah was supposed to be receiving counseling/therapy on a weekly basis and he has never seen her. He has never made it past the initial appointment with any therapist ever. He's "seen" approximately 5 therapists. That is 5 chances this area has had to give my son the services he desperately needs but didn't. He also needs ABA therapy but there isn't a provider here that will accept his insurance. They have been promising an in-home behaviorist for over a year now but nothing comes out of it. The only hospital in the area that will accept him is a county-funded one, he went there in September and I refuse to send him there again. They told him that it was a school and if he wasn't good, he'd never see his mommy or daddy anymore. It made him terrified of going back to school, created a huge fear for hospitals which he loved before, and for 2 months following he had massive separation anxiety. We'd have to drive to Tampa anyway the next time he needs an inpatient stay or residential since there's only one residential center in the Jacksonville area which stays full most times.
The new area's public school system has schools that are specifically for special education. They have an entire school that is devoted to EBD (emotional behavior disorder) with an autism class inside so it caters to both needs. They give PT, OT, behavior therapy, counseling, speech, and much more on site without the child having to take off from school to go to other specialists. Their therapists are a part of the staff, not contracted to come in a few hours a week. They will accommodate any diet and even has a dietician on staff. In this new area Noah actually qualifies for 60+ hours of services a week. We will qualify for 20 hours of respite care a week, he has a daycare that only take special needs children (there was no daycare that was even specializing in special needs, they always told me they would "try it out"). The best part is they also have an autism center that is linked to his psychiatrist's office. I am not even technically moved down there yet (we leave tomorrow afternoon) and I already have 3 organizations working with me to get him signed up for all the services he will need. We have 5-6 psychiatrist hospitals to choose from that will take his age range and 4 residential treatment centers. There are literally 20-30 psychiatrists I could go through that accepts his insurance then when my benefits start July 1st with work, it will widen even more. In Jacksonville, I have TWO psychiatrist to choose from. One is by me, the other in Jacksonville.
5. ASHLEY: I'm sure many of you have good friends but I honestly believe she tops any BFF cake. I met Ashley 8 years ago: Dani was a baby and Ashley was a pregnant teen. To pass time of Lonnie's long shifts I created an online teen parenting group. There were 500+ members and Ashley was one of them. We still stayed in contact even after I closed the group constantly chatting and leaning an ear when needed. She was even the first person to know I was pregnant with Noah! A few years later, we finally decided to meet in person. One might think it'd be awkward meeting an online friend but it was natural and easy for us. She was great with Noah and never mentioned his obvious developmental delays. I didn't know it then but that was the start of our growing friendship. She was there through the diagnosing of Noah. She always knew what to say and if she didn't, she said nothing. She'd let me talk endlessly about everything and nothing. She never judged and she became the person I went to because I knew no matter the issue, she'd be there. Last year she drove 4 hours for the kids' birthday party. Noah was at one of his worst moments; he was completely manic, impulsive, and out of control. You couldn't tell from Ashley though. She acted like I do when Noah is having a meltdown: she didn't skip a beat. A lot of people at the party thought she had been around Noah a lot. Nope, this was the first time since he was a baby! For the first time in years, I felt like I had a true friend. She stayed until the party ended and helped me clean up. Since then we have been virtually inseparable. I won't post how much we talk because it's a little embarrassing but let's just say it's a lot. If it wasn't for her, this move wouldn't be possible. I've never had a friend who was so loving, kind, and generous. When my friend Charles died in 2010, I swore I'd never find a friend comparable to him. While I'm not going to compare, I will say sometimes I feel he brought us closer to say "Stephanie, you deserve someone to trust in again".
Friday, May 10, 2013
Raising A Special Needs Child
This was written by my wonderful husband, Lonnie! He wrote it as his first essay in his Composition I class. I had to convince him to let me post it but he finally gave me permission. For others this may not seem like that big of a deal but to me, I had to hold back my tears. I always post about my feelings of raising Noah but Lonnie never does. So for me to read my husband expressing feelings I feel is incredible. I feel we make up a great team <3
One may have come across a screaming child in the store and it appears as if the parent has no clue what is going on. This happens frequently: a child is screaming, biting their parent or even blurting foul language. This child may appear perfectly normal on first glance. One could assume the parents are neglectful, embarrassed, or even afraid to discipline their child in front of viewing eyes. I tend to wonder what others say about me as I walk through the aisles acquiring food for the following week. The only difference my child has from the others is that he is not using his inside voice. Instead my son is yelling as he communicates to me from a foot away. As some might view this as a struggle, this is simply my normal daily life! I’ve learned to love regardless of the violent outbursts, sleepless nights, offensive language, spitting, and psychotic symptoms. It is almost as if one would question my parenting skills. Unfortunately for me, this is the judgment I have to endure on a daily basis.
The reason it is difficult to observe disruptive behavior from a young child is mostly due to awareness. I’ve realized that over the years of parenting experience is that we rarely think about what may be occurring in others’ lives and focus more on what we are accustomed to in society. One could assume that there are plenty of incidents of children behaving badly due to irresponsible parenting and no accountability for their actions. We observe this every day and it almost becomes second nature. However, the thing we fail to realize is that the stereotype is so common that we are not willing to open our minds to the possibility that it may not be the child nor the parent’s fault but simply a genetic flaw. A missing chromosome does wonders to the mind and body, and it happens more than most realize. As awareness progresses through technology and social media, we slowly piece together the puzzle to the overall idea. This idea being that after the dust settles from the obstacles that blind us, we start to realize that the stigma has always been there and it’s easily interpreted.
When you think of special needs the first thing you may think of is indifference. I have experienced others who have referred to special needs as uneducated individuals who are incapable of accomplishing daily activities without the support of others. This is unfortunately the sad truth you will see every day: the value of oneself based on a label. What we do not understand is that there are a wide range of diagnoses to be wedged into this mild learning. The great thing about the mind is when something is missing another counterpart is amplified. The brain uses its strong points to protect its weaknesses, and then a new way of thought is developed. My child has the ability to imagine sequences through objects, has the understanding of patterns in which his creative mind allows him to build replicas of what he has seen, and the ability to memorize a multitude of key characteristics in a fictional superhero and relay it repetitively. My son, however, does not acquire the ability to tie his shoes regardless of how many times he does it, facilitate in a group of children larger than five, nor can he communicate in a level equivalent to his age. These challenges may not be the same challenges another parent may face; however, we all have challenges in our lives, and we all learn how to improve our way of life through overcoming these challenges.
My challenge is rather simple although it is often followed by others expressing their condolences and sympathy. My challenge is to ensure my child lives a full and happy life without limitations due to his disabilities, without struggles that can be prevented with the use of knowledge and understanding, and without fear of discrimination. Every day is a research paper for me and finding out more information to make it easier on my child to experience a typical childhood of laughter and playfulness. Whether it is finding schools that understand how to diffuse his disruptive and aggressive emotions without interrupting his academic progress, locating a dietary plan that supplements his needs to function calmly without unnecessary additives, or going to endless amounts of doctor and therapy appointments, every day is a challenge. Raising a special needs child is all about knowing you can make a difference in a child’s life out of respect, unconditional love, and patience. Perhaps my challenges are no different from the next parent’s challenges; perhaps it is possible we are just looking at it from a different angle.
Our lives consist of factual information and what we believe to be true. These two aspects can conflict with each other which can make it difficult to relate to another who might not be in the same situation as you. As life progresses what I have written will become clearer and the awareness will continue to expand throughout technology and the world. The information will be more relevant and accessible, perhaps even taught in local schools around the United States. The outcome will be beneficial and stigma will hopefully be erased. A parent should be able to go into a public setting with their special needs child and not have to worry about the judgment others are passing for special needs is just simply that: someone special to you. Instead of automatically criticizing or judging the parent, make the decision that will help end the negativity which stigma brings. The next time you go into a store and see a screaming child I hope you think twice before assuming the worst. Perhaps you will see someone like me, you may even have more compassion, or perhaps you will share a smile as you walk by. I will share a smile right back because as I know today is no different as this is my normal daily life raising a special needs child.
One may have come across a screaming child in the store and it appears as if the parent has no clue what is going on. This happens frequently: a child is screaming, biting their parent or even blurting foul language. This child may appear perfectly normal on first glance. One could assume the parents are neglectful, embarrassed, or even afraid to discipline their child in front of viewing eyes. I tend to wonder what others say about me as I walk through the aisles acquiring food for the following week. The only difference my child has from the others is that he is not using his inside voice. Instead my son is yelling as he communicates to me from a foot away. As some might view this as a struggle, this is simply my normal daily life! I’ve learned to love regardless of the violent outbursts, sleepless nights, offensive language, spitting, and psychotic symptoms. It is almost as if one would question my parenting skills. Unfortunately for me, this is the judgment I have to endure on a daily basis.
The reason it is difficult to observe disruptive behavior from a young child is mostly due to awareness. I’ve realized that over the years of parenting experience is that we rarely think about what may be occurring in others’ lives and focus more on what we are accustomed to in society. One could assume that there are plenty of incidents of children behaving badly due to irresponsible parenting and no accountability for their actions. We observe this every day and it almost becomes second nature. However, the thing we fail to realize is that the stereotype is so common that we are not willing to open our minds to the possibility that it may not be the child nor the parent’s fault but simply a genetic flaw. A missing chromosome does wonders to the mind and body, and it happens more than most realize. As awareness progresses through technology and social media, we slowly piece together the puzzle to the overall idea. This idea being that after the dust settles from the obstacles that blind us, we start to realize that the stigma has always been there and it’s easily interpreted.
When you think of special needs the first thing you may think of is indifference. I have experienced others who have referred to special needs as uneducated individuals who are incapable of accomplishing daily activities without the support of others. This is unfortunately the sad truth you will see every day: the value of oneself based on a label. What we do not understand is that there are a wide range of diagnoses to be wedged into this mild learning. The great thing about the mind is when something is missing another counterpart is amplified. The brain uses its strong points to protect its weaknesses, and then a new way of thought is developed. My child has the ability to imagine sequences through objects, has the understanding of patterns in which his creative mind allows him to build replicas of what he has seen, and the ability to memorize a multitude of key characteristics in a fictional superhero and relay it repetitively. My son, however, does not acquire the ability to tie his shoes regardless of how many times he does it, facilitate in a group of children larger than five, nor can he communicate in a level equivalent to his age. These challenges may not be the same challenges another parent may face; however, we all have challenges in our lives, and we all learn how to improve our way of life through overcoming these challenges.
My challenge is rather simple although it is often followed by others expressing their condolences and sympathy. My challenge is to ensure my child lives a full and happy life without limitations due to his disabilities, without struggles that can be prevented with the use of knowledge and understanding, and without fear of discrimination. Every day is a research paper for me and finding out more information to make it easier on my child to experience a typical childhood of laughter and playfulness. Whether it is finding schools that understand how to diffuse his disruptive and aggressive emotions without interrupting his academic progress, locating a dietary plan that supplements his needs to function calmly without unnecessary additives, or going to endless amounts of doctor and therapy appointments, every day is a challenge. Raising a special needs child is all about knowing you can make a difference in a child’s life out of respect, unconditional love, and patience. Perhaps my challenges are no different from the next parent’s challenges; perhaps it is possible we are just looking at it from a different angle.
Our lives consist of factual information and what we believe to be true. These two aspects can conflict with each other which can make it difficult to relate to another who might not be in the same situation as you. As life progresses what I have written will become clearer and the awareness will continue to expand throughout technology and the world. The information will be more relevant and accessible, perhaps even taught in local schools around the United States. The outcome will be beneficial and stigma will hopefully be erased. A parent should be able to go into a public setting with their special needs child and not have to worry about the judgment others are passing for special needs is just simply that: someone special to you. Instead of automatically criticizing or judging the parent, make the decision that will help end the negativity which stigma brings. The next time you go into a store and see a screaming child I hope you think twice before assuming the worst. Perhaps you will see someone like me, you may even have more compassion, or perhaps you will share a smile as you walk by. I will share a smile right back because as I know today is no different as this is my normal daily life raising a special needs child.
Sunday, March 3, 2013
Disney World 2013: Day 1
I was going to wait until I got home to write on how the trip went but I felt take 30-40 minutes a day to account for the day would be great to let others know how our trip is going, the struggles we have, and it will be a nice thing to look back over :)
Overall I count today as a success. Sure things could have went better but they also could have went a lot worse! We had planned a big breakfast for the kids with Mickey shaped pancakes, sausage, bacon, eggs, and orange juice. Lonnie got up super early this morning and did it. It was alright. The food was great but between the kids' excitement and trying to make sure the car was completely loaded and nothing was left behind, it really didn't get eaten that much. Noah had a meltdown literally 2 minutes after being in the car then 5 minutes later he wanted to know if we were at Disney yet, lol. I won't even lie or exaggerate, the car ride was complete HELL. Noah was having meltdowns frequently and often, he didn't want to be touched which was hard considering our entire family was squished in a small car, and literally every 3 minutes he was asking if we were at Disney World. Lonnie Jr decided now would be a good time to start teasing his brother in which Noah punched him. Then Danielle was crying about having to pee every 5 minutes. Thankfully it was only 3.5 hours so it was short lived (would have been 2.5 hours but somehow we got lost once we were inside Disney World). Noah's hardest time today was adjusting to the idea of staying in a hotel and that we weren't living there. The constant meltdown of the day is that we were inside Disney World but we weren't at the parks. He absolutely couldn't get this concept. He kept wanting to ride rides when there was in fact no rides. Once we got inside the hotel and fed the kids lunch, things were much much better. We forced the boys to take a nap and that gave us time to unpack the luggage, groceries, and just relax from the stressful car ride.
Now I had no plans to promote the resort but I would like to say our experience with Disney resorts has been absolutely wonderful. Their customer service before we got there was superb, it got even better once we were there. In checking in, I was stopped by at least 3-4 people asking if they could help. Even though the place was swarmed with 30+ people, I waited NO time to get checked in. It was incredible. When I originally reserved the hotel, I had explained that we had an autistic son and we need a quiet room away from busy/noisy areas, ground floor, water view if available, and an early check in. They accommodated all requests. We had thought about getting the water view pirate-themed rooms when reserving but it was an extra $30 per night. They upgraded us for no cost! Then the room was insanely awesome. Now we both saw photos so you wouldn't think we were as pleased as we were but it was just AWESOME! The beds are pirate ships, the details are insane, our fridge is inside a barrel, our nightstand is a barrel, the floor is planks... I wanted to share photos just because I am that pleased with it.
After the kids woke up, we wanted to go do something but it was 52 degrees with 20 mph winds so even with heated pools and a hot tub, there's just no way we were going to do the pool. Everything else they had to do was outside oriented so we decided that going to the gift shops, grabbing a bite to eat, and playing in the arcade was a great way to spend our first evening! This caused even more problems with Noah because he saw all the Disney-like souvenirs and so forth but no rides so there was a few meltdowns during the course of the evening. The worst was over milk, we regretted leaving his autism cape at home because the looks we were getting but it was okay. I just told myself that I was here to make a vacation for my family not to justify my parenting to complete strangers. He really didn't eat hardly anything. He ate some of our burger, some fries, and the plate of pickles we got for him! However, with Noah I have learned that whenever we have a hard time with him, he makes up for it in someway. We went to probably about 3 gift shops with little to no issues with him! He looked at toys, found things he loved, and we hardly had to hold his hand. He was near breakable things and still, no issue really. We actually had to get onto our older neurotypical children more than we did him. It was so nice. The arcade was fun and overall no complaints. He really wasn't interested in any games (except taking photos with me at the booth! LOL) but he pretended he could play them or he just followed my mom around. He was a joy and he smiled and laughed. That's all I want! He came home and crashed without his nighttime medicine so after my bath I had to wake him up to give him his medicine. Tomorrow is Hollywood Studios. We are hoping the weather has improved where we can maybe come back for an hour or so to use the pool but we don't have any expectations except for our kids especially Noah to have the time of his life :)
Overall I count today as a success. Sure things could have went better but they also could have went a lot worse! We had planned a big breakfast for the kids with Mickey shaped pancakes, sausage, bacon, eggs, and orange juice. Lonnie got up super early this morning and did it. It was alright. The food was great but between the kids' excitement and trying to make sure the car was completely loaded and nothing was left behind, it really didn't get eaten that much. Noah had a meltdown literally 2 minutes after being in the car then 5 minutes later he wanted to know if we were at Disney yet, lol. I won't even lie or exaggerate, the car ride was complete HELL. Noah was having meltdowns frequently and often, he didn't want to be touched which was hard considering our entire family was squished in a small car, and literally every 3 minutes he was asking if we were at Disney World. Lonnie Jr decided now would be a good time to start teasing his brother in which Noah punched him. Then Danielle was crying about having to pee every 5 minutes. Thankfully it was only 3.5 hours so it was short lived (would have been 2.5 hours but somehow we got lost once we were inside Disney World). Noah's hardest time today was adjusting to the idea of staying in a hotel and that we weren't living there. The constant meltdown of the day is that we were inside Disney World but we weren't at the parks. He absolutely couldn't get this concept. He kept wanting to ride rides when there was in fact no rides. Once we got inside the hotel and fed the kids lunch, things were much much better. We forced the boys to take a nap and that gave us time to unpack the luggage, groceries, and just relax from the stressful car ride.
After the kids woke up, we wanted to go do something but it was 52 degrees with 20 mph winds so even with heated pools and a hot tub, there's just no way we were going to do the pool. Everything else they had to do was outside oriented so we decided that going to the gift shops, grabbing a bite to eat, and playing in the arcade was a great way to spend our first evening! This caused even more problems with Noah because he saw all the Disney-like souvenirs and so forth but no rides so there was a few meltdowns during the course of the evening. The worst was over milk, we regretted leaving his autism cape at home because the looks we were getting but it was okay. I just told myself that I was here to make a vacation for my family not to justify my parenting to complete strangers. He really didn't eat hardly anything. He ate some of our burger, some fries, and the plate of pickles we got for him! However, with Noah I have learned that whenever we have a hard time with him, he makes up for it in someway. We went to probably about 3 gift shops with little to no issues with him! He looked at toys, found things he loved, and we hardly had to hold his hand. He was near breakable things and still, no issue really. We actually had to get onto our older neurotypical children more than we did him. It was so nice. The arcade was fun and overall no complaints. He really wasn't interested in any games (except taking photos with me at the booth! LOL) but he pretended he could play them or he just followed my mom around. He was a joy and he smiled and laughed. That's all I want! He came home and crashed without his nighttime medicine so after my bath I had to wake him up to give him his medicine. Tomorrow is Hollywood Studios. We are hoping the weather has improved where we can maybe come back for an hour or so to use the pool but we don't have any expectations except for our kids especially Noah to have the time of his life :)
Thursday, February 28, 2013
Family Vacations
Being a mother to a disabled child means that sometimes I have to make sacrifices. I knew this when Noah was first diagnosed with Autism and then later Bipolar Disorder. What I did not take into account though is that I wouldn't be the only one making them. I knew Noah would be in Special Education classes the rest of his life in a self-contained classroom; I knew that it's a good possibility that he will have to live with me well past 18 years of age if not the rest of his life; I knew his life would consist of many inpatient psychiatric hospitalizations, and I also knew that all the dreams and hopes I had for him as a toddler were no longer. I dealt with this reality. I never was prepared for the sacrifices my other children would have to make though. They both absolutely love their little brother; there is no doubt about that. I remember when Lonnie Jr was barely 5 and Danielle was 6, we sat them down and tried to explain Noah's disabilities. It was hard for them to understand at such a young age but they all agreed on one thing: Noah is not like other children. We went with that their brother was different and special. They have protected their little brother so many times and sacrificed more than they even realize. Danielle now understands he's autistic and a little bit of what that means but labels don't matter to them, but their fragile brother does. They have taken so much from Noah and never once do they hold it against him. They can't invite friends over out of fear of Noah hurting one of them but that's okay to them, they just lie and say they don't want their friends to stay the night anyway. When Noah was hospitalized for 8 days this past fall, they both cried and constantly asked for him. My daughter slept with his favorite car until he got back and she could give it back to him; my other son drew him probably 50 pictures. A lot of instances where other families can go out, we can't. When we plan a big outing "day", it's always cut short after the first task because Noah gets too stimulated. We once tried to plan a family day to a local water park, the cold water was too much for Noah and we had to go home early.
One might ask: Why in the world would you take all 3 of them to Disney for 5 days then?! I have many answers and many reasons. To get to what inspired this trip: my older kids deserve it! I have great children. Sometimes they're sassy or cranky but most times they are precious, enduring, loving, sweet, and giving. They are absolutely everything I would want in a child. They need to be kids, they need to remember what it's like to not be 7 and 8 going on 30. And as much as those children need it so do my husband and I. This year has been difficult and trying. Our 9th anniversary was in February. Instead of going to Universal Studios for an extended weekend, we wanted to do this instead. Now we did think about leaving Noah at home, I could get my mom to watch him easily. That's what we always have done anyway. But I felt if there was any place that we could take Noah and maybe possibly feel like a family it is Disney World. Then there was the point that Noah is autistic, he is bipolar - all of these things are true but he's still a child. He is a child who deserves a vacation, 5 days where he can feel normal and be like every other kid out in this world. It's where dreams come true after all, isn't it?
My entire point of this blog entry wasn't to justify to others our vacation decision. I just know that when I was doing the extensive research whether to take Noah with us or not, there were so many blogs and articles that helped me immensely. I wanted to help out, give back, and maybe help another parent who might be considering taking their special needs child to the land of dreams! I plan to keep an updated daily blog (it might not all be posted until I get back though) so its a better insight. Below are some pictures of things we did to prepare for this trip!
The first thing we are doing to make our trip a little bit easier and accessible to Noah is getting a single or double stroller (we have yet to 100% decide on which). He has low muscle tone (hypotonia) to start with so we knew we'd either need a wheelchair or stroller. We were going to opt for the wheelchair because it's cheaper ($40 for all 4 days at the park) but he does have a tendency to just get up and dart for no reason. Disney World would give him plenty of reasons so we felt that was a bad idea so a stroller where we could strap him in was the more logical (and safer) option. Due to him being the size of a 7 year old, it made buying a stroller just out of our price range. We got a letter from his neurologist (although from what I understand it isn't required) so we can use his stroller as a wheelchair wherever wheelchairs are allowed. We think this will help his hypotonia but also help the trip and long lines run smoother. We are of course going to try to get the Guest Assistance Card. I keep getting conflicting information if you need a letter from your doctor or not. I had an issue with getting that so I am just bringing a letter from his psychiatrist that lists his diagnoses and hope that's enough IF they need it. I will keep you updated if it was needed or not. And for those who aren't aware what the GAC is, it allows you alternate waiting areas (shaded, away from crowds, etc.) or to enter through the Fast Pass or Handicapped entrance. Disney doesn't advertise that it helps cut your wait down but from what everyone says it does. It also gives you seating at the front of the shows if available. Overall, it is used to alert the cast members that a person has a disability that isn't visible. We are also bringing my mother with us to help with Noah if he is having a meltdown, isn't wanting to ride a ride the rest of the family is, or needs to be taken back to the hotel. We figured a ratio of one adult to every child was a good one!
We are staying on Disney property. There are so many perks to it that it was worth the extra $15 (yes, I said $15) than when we would stay off property thanks to a Florida resident special Disney is currently running. Not to mention that you get free parking at the parks as a perk so let's deduct that to THREE dollars. Our hotel room is decked out in a pirate theme with 6 heated pools where the main pool has 3 water slides for the kids and a shipwreck water park for the children under 4 ft (Noah is just under 4 ft without shoes!). They also provide free transportation every 20-30 to/from the resort if needed so if my mother does need to take Noah back, she can. It's of course a close commute for us even by car so we can take a midday break if needed. They also offer "extra magic hours" that the park is solely open to resort guests only. So on the days the park opens early we can take the kids and enjoy the busier rides without the extra wait and on the days the park is open late Lonnie and I can go back to the park after the kids are in bed to enjoy some "us" time. For us, that $3 extra a night is worth it!
Now one of our big concerns was what happens when we are in public: the stares, comments, and questions. A 2 hour trip to the grocery store is fine to endure this but 5 days back to back I knew would get annoying and we didn't want Noah to be treated unfairly because people simply didn't know. Now the questions I don't mind so much (if they're in good taste) but the unnecessary, ignorant comments and stares would definitely put a damper on our family vacation. We wanted something he could wear saying something about autism but in a cute way. My close, awesome friend from Oklahoma made him a cape that says "I Have Autism ... What Is Your Superpower?" It is adorable and I will forever be grateful to her for that thought of kindness and generosity. She also made a flag we could put on the stroller. We were also very concerned about Noah getting lost. Actually, that was a huge fear of mine. We decided to make a name tag he could wear that had information about him being autistic, what it meant, and all of our contact numbers in the event he got lost or ran off. I even added a little Mickey Mouse on it to "Disney" it up. (My husband also drew a Mickey Mouse head with puzzle pieces on the cape ;))
When packing for the trip we had to address all of his needs: his inability to wait, sensory problems, his diet and selective taste in food. I knew we needed something to occupy him when we did have to wait for a long time (the GAC doesn't help you with meeting the characters which is one of the things he's most excited about). I decided the best plan was to bring his Leap Pad equipped with headphones and his Scooby Doo game. We were bringing this anyway for the car ride but it will be recycled in the park as well. We also knew some of the shows, parades, and attractions would be too noisy for him but we still wanted him to be able to enjoy them so we invested in some soft ear plugs for him. Even my older kids want to use them to on the rides that are too loud! I had to get him sunglasses as well since the sun is too bright. We also packed his blankie he uses to chew on and then one to cover up with in case he wants to take a nap (which we are hoping on!). We are making sure to bring his favorite snacks if it doesn't have to be refrigerated and some which do since there's a fridge in the room. I figure at least that way he will be able to eat when we go back if he doesn't eat very much at the park!
Well, that is it so far. I am excited and nervous. I really hope the kids have lots of fun and this is a positive experience.
One might ask: Why in the world would you take all 3 of them to Disney for 5 days then?! I have many answers and many reasons. To get to what inspired this trip: my older kids deserve it! I have great children. Sometimes they're sassy or cranky but most times they are precious, enduring, loving, sweet, and giving. They are absolutely everything I would want in a child. They need to be kids, they need to remember what it's like to not be 7 and 8 going on 30. And as much as those children need it so do my husband and I. This year has been difficult and trying. Our 9th anniversary was in February. Instead of going to Universal Studios for an extended weekend, we wanted to do this instead. Now we did think about leaving Noah at home, I could get my mom to watch him easily. That's what we always have done anyway. But I felt if there was any place that we could take Noah and maybe possibly feel like a family it is Disney World. Then there was the point that Noah is autistic, he is bipolar - all of these things are true but he's still a child. He is a child who deserves a vacation, 5 days where he can feel normal and be like every other kid out in this world. It's where dreams come true after all, isn't it?
My entire point of this blog entry wasn't to justify to others our vacation decision. I just know that when I was doing the extensive research whether to take Noah with us or not, there were so many blogs and articles that helped me immensely. I wanted to help out, give back, and maybe help another parent who might be considering taking their special needs child to the land of dreams! I plan to keep an updated daily blog (it might not all be posted until I get back though) so its a better insight. Below are some pictures of things we did to prepare for this trip!
We are staying on Disney property. There are so many perks to it that it was worth the extra $15 (yes, I said $15) than when we would stay off property thanks to a Florida resident special Disney is currently running. Not to mention that you get free parking at the parks as a perk so let's deduct that to THREE dollars. Our hotel room is decked out in a pirate theme with 6 heated pools where the main pool has 3 water slides for the kids and a shipwreck water park for the children under 4 ft (Noah is just under 4 ft without shoes!). They also provide free transportation every 20-30 to/from the resort if needed so if my mother does need to take Noah back, she can. It's of course a close commute for us even by car so we can take a midday break if needed. They also offer "extra magic hours" that the park is solely open to resort guests only. So on the days the park opens early we can take the kids and enjoy the busier rides without the extra wait and on the days the park is open late Lonnie and I can go back to the park after the kids are in bed to enjoy some "us" time. For us, that $3 extra a night is worth it!
Now one of our big concerns was what happens when we are in public: the stares, comments, and questions. A 2 hour trip to the grocery store is fine to endure this but 5 days back to back I knew would get annoying and we didn't want Noah to be treated unfairly because people simply didn't know. Now the questions I don't mind so much (if they're in good taste) but the unnecessary, ignorant comments and stares would definitely put a damper on our family vacation. We wanted something he could wear saying something about autism but in a cute way. My close, awesome friend from Oklahoma made him a cape that says "I Have Autism ... What Is Your Superpower?" It is adorable and I will forever be grateful to her for that thought of kindness and generosity. She also made a flag we could put on the stroller. We were also very concerned about Noah getting lost. Actually, that was a huge fear of mine. We decided to make a name tag he could wear that had information about him being autistic, what it meant, and all of our contact numbers in the event he got lost or ran off. I even added a little Mickey Mouse on it to "Disney" it up. (My husband also drew a Mickey Mouse head with puzzle pieces on the cape ;))
When packing for the trip we had to address all of his needs: his inability to wait, sensory problems, his diet and selective taste in food. I knew we needed something to occupy him when we did have to wait for a long time (the GAC doesn't help you with meeting the characters which is one of the things he's most excited about). I decided the best plan was to bring his Leap Pad equipped with headphones and his Scooby Doo game. We were bringing this anyway for the car ride but it will be recycled in the park as well. We also knew some of the shows, parades, and attractions would be too noisy for him but we still wanted him to be able to enjoy them so we invested in some soft ear plugs for him. Even my older kids want to use them to on the rides that are too loud! I had to get him sunglasses as well since the sun is too bright. We also packed his blankie he uses to chew on and then one to cover up with in case he wants to take a nap (which we are hoping on!). We are making sure to bring his favorite snacks if it doesn't have to be refrigerated and some which do since there's a fridge in the room. I figure at least that way he will be able to eat when we go back if he doesn't eat very much at the park!
Well, that is it so far. I am excited and nervous. I really hope the kids have lots of fun and this is a positive experience.
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