March 4, 2010
Nathan’s New School
Nate has been at his new private autism school for a little over a month now. Things have NOT been easy. Why is it that people lie? At our intake meeting (a meeting with old school staff & the new staff before the child starts attending the school) we were promised the following…a reward system put in place for him, our old school district’s curriculum stated as soon as they received the materials, a written schedule that he could follow, and a classroom with higher functioning kids that are on the same level as Nate for social interaction and academics. After 4 days they moved him to a classroom with lower functioning kids and offered me this explanation, “Nathan was being teased and called a baby because he was crying a lot and asking for him Mom.” They didn’t think this classroom was a good fit for him. But they only gave it 4 days!!!
So, I went to observe the new classroom and was NOT happy! There was no reward system for him, they were not using the provided curriculum, he was not getting group instruction with a teacher leading the lesson, there were a few kids that could possibly be at the same level as him socially. It looked like a day care not a classroom!
So we had another meeting with the old staff & the new staff to go over things. It was not fun and I got ugly!! I asked why they moved him to this type of environment when it went against everything we wanted for him. I was told “Nathan was being bullied and threatened in the old classroom.” EXCUSE ME????? You said, teased and called a baby…now it’s bullied and threatened????
Yes, I was lied to! A few of the kids in the old classroom couldn’t handle it when Nate cried and screamed and were threatening to punch him in the face if he didn’t stop. Why didn’t they tell me that right from the start? They would have saved me a lot of grief and stress! So, going forward he is splitting his time between the 2 classrooms and so far it’s working. But now I don’t trust the staff!
Putting him in a private school was one of the most difficult things I ever had to do in my life for many reasons. Moving him out of public school to a private one means that there is a chance he would never be able to go back to public school around typical kids he could learn from. He may never make friends around the neighborhood because he doesn’t go to school with them. Will he pick up bad habits from the lower functioning kids at private school? This school is almost an hour and a half away on the bus (one way). Will that be too much for him? etc, etc, etc
All I can do is trust that this was the right thing to do for him and keep on the staff to make sure they do what we want them to do. I do hold out hope that I will be at peace with autism some day. But it keeps dragging me down. I win one battle and there are 10 more behind it ready for a fight. Autism parents are fighters, and we are tough!
So if you know an autism parent, tell them how tough they are, tell them they deserve a day off from the fight to de-stress and renew their energy. Better yet, offer to babysit so they can take a day off!!! 🙂
December 12, 2009
2009 – A look back on one challenging year
So I haven’t written here since February and I have a very good excuse. Autism pretty much took over my life this year. My support group (PAASS) has about 45 families now which is awesome but it keeps me busier then I thought it would! I also am on a committee to start another parent/professional group within the Kendall County Special Education Co-Op. I love doing this but again, busy, busy, busy….
Then I got very involved with the state of the State of Illinois and how horribly services for people with autism have been mismanaged. It’s truly criminal how people in our state are treated and how people are not getting services they desperately need. Including my family!!
But enough of that…I could rant for ever!
2009 was the most challenging year we have had since Nathan was diagnosed. Nathan was sick the entire winter with ear infections. The antibiotics to cure the ear infections made him aggressive and violent (even more so then he normally is). So that was extremely hard to deal with. In April we finally made the decision to try medicationto lessen the aggression and that worked for about 3 weeks and then he got sick again and it was like he wasn’t even taking the meds any more. Because of his aggression, we cut his school day by an hour and I began to pick him up every day. This helped a little but not enough.
Instead of going to summer school, we thought he could use a break from school and enrolled him in a summer day camp for kids with special needs. He loved it and did very well there. However, from the second I picked him up until the second he went to bed, he was tired and cranky and all he did was melt-down. Not a fun summer!!
Then school started and he was a 1st grader! We had such high hopes for this school year because the district had hired an autism consultant who I knew was great and brought in an OT and a speech path both of which are great. I thought we had the dream team and thought everything would be wonderful! Boy was I wrong!! Nathan is very smart and is at or above grade level in all academics but he struggles with social skills and behavior. Our dream team couldn’t handle his melt-downs and wasn’t teaching him the right coping skills. After 2 months of this behavior, they started calling me to take him home after melt-downs. So now he knows that if he has a fit, they will call me and he will go home! And home is where he wants to be!! So guess what, he came home…a lot!!
We have decided to place him in a private school but we don’t know where yet…I will keep you updated.
All this time, Nathan was still getting sick all the time. After consulting an ENT, we scheduled him for surgery on Dec. 7th. At that time, they did nasal/sinus surgery and the dentist filled 2 cavities along with cleaning etc. We are hoping that when he is fully recovered, he will be sleeping better and his aggression will be milder. Keep your fingers crossed for us, please!!
So that’s the bad part of 2009. Maybe it doesn’t sound that bad but believe me, it was BAD!
What was good about 2009? Well, Nathan continues to amaze us with his computer skills. He can surf the net better than most people and can find anything he wants!! He can type better than I can! His reading comprehension has improved greatly and his math skills have also improved. He is asking “WH” questions spontaneously every day and talks in complete sentences more & more. He seems a lot more interested in other kids and wants to play with them more often. Though sometimes he just doesn’t know how to join in. (we are working on that)
We are lucky enough to be apart of a state program called Family Focus and it is wonderful. Basically, our leaders have trained us to teach Nathan skills we want him to learn and they have helped us form a team of support around our family. We have meeting where we discuss goals for Nathan and how to reach those goals. Our team is awesome!!
Well, that’s all I can type right now. I try every day to see a positive thing about Nathan even if it’s something very minor. Some days it’s very easy to do…some days, not so easy. Seeing him struggle makes my heart break but I have to get through, push on and get ready for the next battle…because there always is a next battle.
To all the autism parents out there I say, stay strong, stay positive, and remember you are not alone. Use the internet to find a support system, we are out here and are willing to help each other!
February 17, 2009
Meds or no Meds, that is the question of the day…
Nathan has been very aggressive at school with the other kids. One little boy in particular. There is no reason that anyone can think of that would make Nathan dislike this boy. He has had problems in the past with kids who scream or yell but this little boy is very quiet and the teachers cannot think of any issues that he & Nathan have ever had. As a result of his aggression, he spends most of his day at school in a time-out or quiet area so he can calm down.
This past week was a little better so I’m hoping that it will continue to get better BUT…he has had a 4 day weekend and does not want to go back to school tomorrow so my gut is telling me that it will be another bad week!
The school has been trying many different things to make things better for him but nothing has been the “THING” that did the trick. Nathan is acting this way because he is stressed out and it kills me not to be able to help him. There is nothing I can do to help him to NOT be stressed out at school.
It was recently suggested to me (not by the school) to consider medication. This scares me to death!!! I know that at some point Nate will have to be on meds but I was hoping not until around puberty. I know I am not the first parent faced with this type of decision but when it’s your kid…it really sucks!
My heart & mind are telling me to wait and see what the next few months are like. Am I doing the right thing? Would medication help him cope better and am I making a mistake in waiting? Oh, if I only had a crystal ball!!!
December 27, 2008
Update for 2008
It’s been a while since I posted something personal. Mostly I’ve posted information about autism or current events. But since it’s the end of the year, I wanted to give all of you an update on Nathan’s progress.
2008 was a year with many celebrations and some disappointments. Our biggest celebration was Nathan’s potty training. I am happy to announce that at age 5 1/2, he is fully potty trained and has been since late summer!! He even “goes” by himself now!
Going to kindergarten for a full day was a huge change for him but he is handleing it well. He does better in the mornings and gets tired in the afternoon but he adjusted to the change pretty well. He still struggles with eating at school. He doesn’t like to eat with a lot of people around and is still so picky! Packing his lunch box is a challenge to say the least. What he likes today, he hates tomorrow.
Nathan also still struggles with impulse control. Mainly with turn taking, losing at a game, and waiting his turn. He will get aggressive with other kids when things don’t go his way or when a change occurs (positive or negative change both effect him). Because he can be aggressive, he has a hard time making friends.
On the up side, his communication skills have improved greatly. He has become a lot more interested in other kids and has bonded with one little boy at school. We have been giving him fish oil in his apple juice and I think it really helps him. We will be starting another supplement called Behavior Control. It’s a blend of vitamin B’s and magnesium and some other herbs and minerals. Hopefully it will help him stay in control a little better. He is still 5 and 5 year olds don’t have a lot of self control but we want to give this a try.
I think the hardest part of autism for me is watching Nathan try so hard and still not be able to keep it together. I can see in his eyes and face how hard it is for him. I think he wants to be able to focus better and he wants not to hit other kids but that part of his brain doesn’t let him. An autistic person’s brain is wired differently. Because of this, Nathan doesn’t process information properly. Things he hears, sees, smells and touches can overwhelm him and cause him to melt-down. I can tell when he is getting overwhelmed and is trying not to be. It can break my heart!!
He also is very hyper. He is never still, he jumps, paces, spins, runs, bounces, etc. constantly. Even when he watches TV or plays in the computer, he isn’t still. He never sits down to do these activities. When I can get him to sit to color, it’s really hard for him. Sometimes a weighted blanket will help him settle down but not always.
Looking ahead to 2009, Nathan will start back at theraputic riding in the Spring, Summer & Fall, baseball in Spring and Fall, possible Sensory Integration therapy and we will continue with tutors at home. In January he is going to take a music/drama/art class for kids with special needs. It will be a busy year and we are very hopeful that it will be a year of progress and of great things!! Please keep us in your prayers and thoughts, we need a great amount of strength and patience to make it through each day. Thanks for reading!!
November 4, 2008
Autism linked to Rainfall
Here is a link to an interesting articel about autism rates in the North West U.S.
http://www.comcast.net/articles/news-science/20081104/SCIENCE-US-AUTISM-RAIN/
October 25, 2008
IADD-PAC Illinois election endorsements
PLEASE VOTE FOR AND SUPPORT CANDIDATES WHO SUPPORT OUR ISSUES!
Authorized by the Illinois Autism and Developmental Disabilities Political Action Committee. A copy of our report will be available for purchase from the State Board of Elections, 1020 S. Spring Street, Springfield, IL 62704. Political contributions are not deductible for income tax purposes. For more information, go to www.autismpac.org
These endorsements are made in a limited number of contested races and are intended to recognize those 2008 candidates who have made superior efforts on behalf of our families. Non-inclusion on this list does not imply that a candidate is not supportive of our cause or our legislative priorities. Additionally, some contested races feature more than one candidate who has shown significant support for our issues, or feature candidates with limited or no records on our issues and, therefore, no endorsement is listed for those races.
The following candidates are endorsed because they have demonstrated outstanding commitment to legislation and budget initiatives that will improve the lives of children, adults and families affected by autism and other developmental disabilities:
Illinois Senate Endorsements
District Candidate (Party)
9 Jeff Schoenberg (D)
21 Dan Cronin (R)
27 Matt Murphy (R)
30 Terry Link (D)
33 Dan Kotowski (D)
42 Linda Holmes (D)
54 John Jones (R)
59 Gary Forby (D)
Illinois House Endorsements
District Candidate (Party)
17 Elizabeth Coulson (R)
20 Michael McAuliffe (R)
43 Ruth Munson (R)
44 Peggy Brothman (R)
45 Franco Coladipietro (R)
46 Dennis Reboletti (R)
49 Tim Schmitz (R)
53 Sid Mathias (R)
55 Harry Ramey (R)
56 Paul Froehlich (D)
57 Elaine Nekritz (D)
58 Karen May (D)
59 Kathy Ryg (D)
60 Eddie Washington (D)
65 Rosemary Mulligan (R)
69 Ron Wait (R)
75 Careen Gordon (D)
80 George Scully (D)
83 Linda Chapa LaVia (D)
85 Brent Hassert (R)
89 Jim Sacia (R)
90 Jerry Mitchell (R)
99 Raymond Poe (R)
103 Naomi Jakobsson (D)
104 Bill Black (R)
106 Keith Sommer (R)
112 Jay Hoffman (D)
115 Mike Bost (R)
August 17, 2008
Try, Try Again
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
July 19, 2008
Michael Savage claimed that autism is “[a] fraud, a racket. …
Here is a link to Michael Savage’s ignorant remarks about Autism. Please contact your local radio station that carries his show and tell the manager what you think about this jerk’s statements!! I would say more but I don’t think I can write the words I really want to say. Thanks for your support!
July 11, 2008
News Report about Newest Autism Research
Here is a link to a news report about the genetic link in autism. Very interesting…may be the reason some kids get better and some do not???
June 13, 2008
Days of Our Lives adds Autism Story Line
I haven’t watched “Days” since I was in college but I am going to start watching it agin on June 24th! They have added a story line about a couple with a 3 year old son who has autism. It will be really interesting to see how they do this and how realistic it is. See the link for more info.
http://www.autismspeaks.org/press/days_of_our_lives_autism_story.php
Life with Autism - Nathan's World 