Ian's story

Many people ask me about Ian's "diagnosis". For the most part he "looks" normal. As they say, you can't judge a book by its cover. I will now tell Ian's story from my pregnancy to the present. The good and the bad.

As I've said before, my pregnancy with Serena was a complete surprise. I promised myself that the second time around I would know it and be more aware of the changes in my body. And I did. We were at Kings Dominion during spring break 2006 and I was not feeling well. I took a pregnancy test when we got home and there were those two pink lines. I immediately contacted my doctor and began receiving prenatal care. At about 20 weeks my blood pressure started to go up and my kidney function started going down. At the end of September of that year I was put on bed rest. At this point I was told that if my health continued to decline that they would have to take the baby and his/her chances for survival were low. Some weeks my checkups were good sometimes, not so good. The days, weeks and months slowly ticked by. Each day the baby was growing and getting stronger. By Christmas, the doctor lifted the bed rest restrictions. I had made it to 38 weeks. At this point I had gained an enormous amount of weight which mostly was fluid. My doctor warned me they the baby was large, approximately nine pounds. The last few weeks of the pregnancy was hard as I was huge and uncomfortable. Finally, on January 3, 2007 I had a scheduled C section and Ian was born weighing 11 lbs 4 oz. He came out crying and peeing on the doctor. Unlike Serena's birth, I got to hold him immediately. Although all was good with him, all was not going well on the operating table. Because of Ian's large size the doctor had a hard time getting him out. I had bled out and needed a lot of patching up including getting my tubes tied which I had requested beforehand. I was also made aware that my blood pressure had spiked. After all was said and done, I was pretty banged up and in a lot of pain but I would be OK. As I spent time with Ian something didn't seem right. I couldn't put my finger on it but my Mommy gut was telling me that something wasnt right with him. While in the hospital he would shake. The nurses took his blood sugar and it was normal. All newborn tests were normal. He also refused to nurse. He would not latch on no matter how hard I tried. I eventually had to give him formula through a siringe. Eventually I gave up and went 100% to bottles and formula. At least he had some breast milk. After he was born I battled my blood pressure, post partem depression and a staph infection of my incision. I was in a dark place for a long time but my goal was to get back to work after missing over half the school year.

Everything seemed OK with Ian's development. Although he would only allow myself and one lady at his daycare to feed him, nothing stood out to me as being unusual. Ian was sick a lot with ear infections, flu, croup, hand/foot/mouth disease...you name it and he probably had it. By the end of the 2007 school year, things were not good at our house. I had sunk to my lowest point. One sign that I wasn't doing well was I quit my job that I had had for eight years. I started a new job at the school Serena would be starting kindergarten. I hoped things would get better...but they didn't....things would get much much worse.

Besides Ian being sick all the time, in the winter of 2008, he took a turn for the worse. He stopped babbling, stopped eating and he would sit playing with tags rocking back and forth. In my Mommy gut I knew what IT was but it took one of his caregivers with tears in her eyes to say "I think he's Autistic." for me to admit that he needed help. That summer Ian began Early Intervention services which involved speech, behavior and OT services. He was using sign language and I had some hope that things would get better. Boy was I wrong.

I decided to take Ian out of day care and began using a private babysitter who cared for one other child. At this point Ian had become destructive and physically aggressive to others. Which at the time, mirrored the conflict going on in our house. My partner and I were fighting constantly over money, the kids, and appropriate (or lack thereof) relationships with others. The day after Halloween 2008, it all came to a head, I finally ended the 12 year relationship. I had gone back to church and had done a lot of praying. I knew things had to change...and fast.

A few weeks later Ian's babysitter called and said that Ian had spit in her face and she just couldn't help him, and I would need to find another babysitter. A friend of mine had an in home daycare and offered to take him so I took her up on the offer.

Also at this time I began discovering the online world. I joined MySpace which was my outlet for the frustration, pain and loneliness that I was feeling inside. I was desperate to find something or someone to give me happiness that was missing in my life. And I found it er rather him. The man that would later become my husband. My ticket out of my misery or so I thought.

Ian turned two right after I got married in December of 2009. We moved to Alabama that next summer. Ian continued with Early Intervention until he turned three then he should've began receiving services through the school system. His speech had developed to the point that he didn't qualify for speech services. In that meeting I requested further testing because Ian was, after all Autistic. I was told to take him to a Private Psychologist for a diagnosis, which I did. Diagnosis of PDD- NOS (Pervasive Developmental Delay-Not Otherwise Specified) In other words he had some but not all the typical signs of Autism. Enough to qualify for school services or so I thought. The Special Education Administrator of that school system basically laughed at me saying Ian was spoiled but not Autistic. Ian was in a regular day care center/preschool and things were going from bad to worse, academically and behaviorally. Only after that Administrator retired and Ian had a huge meltdown which involved the evacuation of his preschool, did people finally listen to me. Ian was referred to the mental health system as well as Glenwood who are the "Autism Gurus' of Alabama. Ian started seeing a Counselor and Psychiatrist. Glenwood diagnosed him as having Autism and he was found eligible for special education services. The city school system didn't have any preschool special needs program so I got permission for him to attend the preschool program in the school system that I worked for. Eventually we would move so that the kids would live within the district that they attend school. Also leaving behind the school system that ignored my cries for so long.

After leaving Preschool Ian attended a "self contained" special education classroom for Kindergarten and now First Grade. He has spent ZERO time in a regular education classroom. I was hoping this year would be the year that he could transition into a regular classroom but due to his unpredictable behavior, it hasn't happened.

I took Ian out of church due to his behavior and lack of trained support.

So what's his diagnosis? As his Psychiatrist stated, he's a little bit Autistic, a little bit Bipolar, and a little bit ADHD.

Meds? Antipsychotic medications for his behaviors..Haldol and Clonidine

What behaviors does he exhibit? Anger-hitting, throwing things, kicking, spitting
Wierd food preferences, intolerance to loud noises, difficulty learning basic concepts, routine oriented and gets upset if schedule changes, self injury, obsession with death and at times he has been suicidal. Not to mention his tag obsession (purposely puts clothes on backwards to have easy access to tags)

What does all this mean? I don't know. We take each day one day at a time.

What is in Ian's future? I'm most in fear of puberty and him hurting himself or someone else. I fear that at some point we won't be able to attend school and/or will need to be hospitalized.

Suggestions for parents in similar situations. Advocate, be informed, don't pay attention to  the naysayers, its your child and NOBODY knows what its like to be you. Be strong. Be brave. Make a plan. Try to live a normal life even though there's nothing normal about it.