I have many things to be thankful for this year and many wonderful things to look forward to and here is a little recap of what our journey has been this year.
On December 3, 2008 my son was initially diagnosed with ASD. I’m looking at his report now. One year ago he was 2 ½ years old with six words. He could not follow two step commands and did not consistently follow one step commands. He did not like to look at people in the eye and seemed to sometimes be in his own world. The evaluator wrote “eye contact was diminished”. He would communicate he wants and needs by pulling us to where he wanted to go, crying, whining or tantruming. His tantrums were quite severe ranging upward of 20 minutes and involved head banging, hitting, kicking and biting. He didn’t eat in strange place or even in daycare which he was at for 4 hours a day. His diet was limited to mostly brown salty foods. His joint attention was very limited especially to none preferred activities. He had very little awareness of safety. He would spin in circles and flap his arms when he was really happy about something. He woke up several times a night and some times it would be for two or three hours at a time. We had taken P out to eat at a restaurant exactly two times and both times had been a nightmare and we had were not able to eat. Going to the grocery store, clothing store or even the drug store was a two person job.
On February 6, 2009 was when we got a diagnosis from a neurologist, ASD or PDD-NOS. I was still holding out minimal hope at this point that all my son had to do was learn to talk but I hit rock bottom with this diagnosis from the neurologist. The neurologist noted that he had “peculiar mannerisms or stereotypies using his hands”. Or early intervention therapist (who we brought with us for this trip) mentioned to the neurologist that he had staring spells of 15 or 30 seconds. And the neurologist thought he had the possibility of seizure activity because of the staring spells and scheduled him for an EEG. The neurologist ran a number of tests including Fragile X, DNA and celiac blood panel. All lab work including the EEG came back normal but it still left us not knowimg what the staring spells were.
On January 1, 2009 we introduced rice milk and fazed out whole milk which he was having three time a day. I immediately noticed the difference. We also started to pull milk from most other food products he was eating. He still had no language but the eye contact was the main gain we got from pulling the milk. By February we had completely pulled the three times day milk drinking and substituted it with rice milk. Also in February he started melatonin for sleeping. Melatonin was a god send and this is honestly the only thing I credit our neurologist for helping us with. He still wakes up once a night, but more often than not he is only up for a few minutes. Everyone sees this at a problem but not us; this was and is pure bliss from where we were.
In March we started the transition process from early intervention to preschool. We took another mental hit here though. All five evaluations done by the school district placed my son well below his age. He was testing a least a year behind and in most cases he was testing as if he was a 1 year old. We had the IEP meeting and P was sent to the one classroom in the district that could handle his needs. There were five children in the classroom, one teacher and three aides. With almost a one to one ratio that should give you an idea of how great his needs were. He was also accepted into the summer school program. But the transition was not very smooth. I tossed and turned over this one but finally decided not to have him participate in the summer program. I decided to have him start in September when he would have his regular teacher and aides and not ones for just the summer program.
In May his total therapy time a week was up to 15 hours. The last two months with intensive early intervention is where we really lucked out and got some great ABA therapists. I was so sad to loose them but we couldn’t afford to keep them at $80 an hour. So at the end of May he lost all his services and we went one month with no help. In June he finally started OT twice a week. And in August we started ABA with the provider from the district who turned out to absolutely wonderful and we still have her now. In the meantime we were very slowly pulling more dairy and more gluten from his diet. We were finding one substitution at a time. In May I also finally called and made an appointment to see the DAN Dr. who we wouldn’t be seeing until September. The summer was long and we didn’t have a lot of help and therefore didn’t see any great gains. I do think we lost a lot of time but we did the best we could.
In August we got our act together and pulled everything from my son’s diet, gluten and diary. With the help of ABA, OT and diet we started to see some more gains.
And finally in September he started school and the program and teachers have been great so far. We were finally up tp 30 hours of in school, at home and private therapies. Then at the end of September we saw the DAN doctor after the 4 ½ month wait. And the B12 shot was introduced into our lives, when my husband finally was on board because our son started talking. Not fully on board mind you, but he seems to be stepping up the ladder the more P talks.
So here I am today December 29th. The year has brought me heartache I couldn’t imagine and joy I can’t put into words. P had well well over 100 words now, is forming two and three words sentences. He can sit at circle for 30 minutes. He only spins now because he loves to be dizzy and is copying some of his movies. I can’t remember the last time I’ve seen him flap his hands. He loves to have his lunch at school. Almost all tantrums he has are age appropriate and not because he cannot communicate with us. He likes to come up in your face and stare you down if you aren’t paying enough attention to him. No more staring spells. P is by no means close to where he needs to be, and I still have many fights ahead of me. One year later I have come to terms with my son’s diagnosis and I write this rereading his old evaluations and so clearly remembering how far P has come. A snap shot back at what it was like last January, I had no hope and didn’t know where to turn for help. I must have been so much fun to hang out with. There have been many people who have stepped up and helped P and us along the way. With their help, through research, an insane amount of luck, I think I mostly did the right things last year. So I have no resolutions this year. I am going to keep doing what I’ve done to help P and hope that next year on December 29th I can look back and P will have made as many if not more strides forward.
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