I have been waiting to hear if Nathan qualified for state funding under a Medicaid Children’s Wavier program since January. The program would give us about $1500.00 a month for therapy services so this is a BIG deal!!! We finally got a response back last week and he wasn’t rejected but they need more evaluations of him. His IQ is too high for immediate funding! I guess they didn’t take into account his behavior problems or communication problems etc…
This is a copy of a letter I wrote to help plead my case for funding.
To Whom It May Concern:
I am writing this letter to help the review board for the Children’s Waiver Program understand what a typical day is like for our family. My name is Debi Lockwood, my husband Scott and I have a 7 year old son Cameron, and a 5 year old Autistic son, Nathan.
On September 29, 2005, Nathan was diagnosed at age 2 ½ with Moderate Autism. And that was the day our world changed for ever!
We have had issues with Nathan since the day he was born. We would work through one problem but there would be many more new problems that surfaced. I wish I could tell you everything that has happened to us in the last 5 ½ years but I will try to limit this letter to the present.
There are so many little things that you do everyday that you take for granted like brushing your teeth or eating lunch. For Nathan and for us, everything in his daily life is a struggle or problem. Nathan is a big kid, he is 5 ½ but is the size of an average 8 year old. And strong as an ox!! Because of several sensory issues, Nathan hates to change his clothes, brush his teeth or hair, or sit at the table to eat a meal. I have to physically hold him down to do these things. Imagine doing this several times a day EVERY day – it’s exhausting!
Let’s talk about eating and food: Nathan eats only a handful of things, mostly crunchy foods. And that changes meal to meal, I never know if Nathan will eat the foods that he liked yesterday. For this reason, we end up throwing a lot of food away. With food prices being so high this puts a strain on our budget.
He has a very sensitive stomach so if he drinks too much fruit juice he gets diarrhea but if he doesn’t get enough fruit juice, then he gets constipated. (He rarely eats fruit) Then there is the issue of sitting for a meal. Nathan cannot sit for more then 30 seconds during meal time. So he will come to the table, sit and eat one or two bites then run away. We’ve worked on this and worked on this but I think this is as good as it will get. He would rather drink then eat, so when he does eat, we are thrilled. A lot of the time he walks around with food and eats it. Because he will actually eat this way, we allow him to do it. Of course he usually makes a big mess with the food and then we have to clean it up. This might not sound that terrible but we deal with this 3 times a day every day! We want to have a peaceful family dinner every night but our dinners are very stressful.
We have been working on toilet training with Nathan for about 2 years. It’s a very frustrating process. He has made a lot of progress but still has accidents every day, mostly when he has to poop. If we don’t get the messy underpants off of him right away, he will make a huge mess with it. He will smear it on the walls, floors, furniture or even on himself. I probably don’t need to tell you what cleaning this is like.
Nathan needs CONSTANT supervision. Mainly for 2 reasons; he can be very destructive and because he has no fear and puts himself (and others) in danger.
He will take pictures off shelves & walls and throw them. When he is frustrated he will throw toys or whatever he is playing with. He is a computer genius but when he gets mad, he will pound on the keyboard or knock over the monitor.
Nathan has no sense of danger. He runs away from the house and runs away when we are outside. This makes it very stressful to take him anywhere. We have had close calls with him running into a pond and into the street. We always hesitate to go to parties, play dates, and family functions because crowds can be stressful for Nathan. Dealing with melt-downs and/or him running away is hard on our entire family. As a result, we mostly choose to stay home. Then we feel isolated and alone. I have lost several friends because they don’t understand our situation. Our older son misses out on fun activities and he is now old enough to know he is missing out on things. We rarely get to do things as a family. Usually my husband or I take turns doing things with our older son and the other adult stays home with Nathan. It’s really hard seeing other families doing fun things together when it’s so hard for us.
Nathan hits, kicks, and pushes other kids. When he hears a child cry or scream, he immediately runs to that child and hits them. We don’t know why he does this and it makes us on edge whenever other kids are around. Nathan is obsessed with babies in strollers. Whenever he sees a stroller, he runs to it and hits the baby inside. Thank God he never hit a baby hard enough to hurt them! I’m sure you can imagine how horrified I am when this happens! And I’m sure you can imagine how horrified the parent of the baby is too!
Nathan doesn’t sleep more then a few hours at a time. We put him to bed; he sleeps for a few hours then comes in our room. Sometimes I bring him back to his room and sometimes he comes in our bed. Either way, he usually stays awake for anywhere from 20 minutes to 2 hours. If we are lucky, he then will sleep until morning. This happens EVERY night. My husband and I never sleep through the night. We walk around sleep deprived every day.
Nathan has limited verbal skills. We use a lot of pictures to communicate. Making the picture schedules and social stories takes a lot of time and energy. Using them really helps him but is a lot of work for us.
Finding a babysitter who can handle the melt-downs and use the pictures is almost impossible. My husband and I rarely get out for a date night, maybe 3 times a year and it’s always only a few hours at a time. Our sitters can only handle him for a short period of time.
Our older son has a very difficult time dealing with Nathan. He said to me “I don’t want an autism brother, I want another brother.” Nathan will hit, kick, & push Cameron just like he does other kids and Cameron doesn’t understand why he does this. Even though Nathan is younger, he is bigger then Cameron and has hurt him on many occasions.
The last thing I would like to address is another reason why Nathan needs constant supervision. Most 5 year olds can play by themselves or with other kids for long periods of time. If left to play by himself, Nathan will slide into his own little world of autism and it can be very hard to get him out. I’ll explain further: when he is having a good day and we interact with him a lot, he will use eye contact and his words more often. Melt-downs are better or not at all. When he goes into his own world, there is no eye contact, no words, many melt-downs and everything is miserable. Usually 20 minutes of stimming or computer time is all I can allow him or he will retreat into his own world. Someone (usually me) has to then step in and re-direct him to a structured activity. It’s an awesome amount of responsibility and pressure to keep up this routine. I need help keeping him on track. He has made a lot of progress and we want to keep the momentum going but it’s very, very hard.
Nathan would benefit from services to address his daily living issues with grooming skills, eating, sleeping, safety, appropriate behaviors and communication. Services that would address his needs would include ABA, RDI, speech, sensory integration/OT, therapeutic horseback riding, professionally run social groups, and music therapy.
Respite services with a trained direct support professional would benefit our family by allowing us social opportunities without compromising Nathan’s safety.
I hope this helps to explain our situation.
Thank you for your consideration.
Debi Lockwood
