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My special guy [Archive] - DFW Area Moms
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My special guy

Julia
12-12-2004 Sunday, 01:49 PM
I had an easy pregnancy. Lots of restrictions because of my pregnancy with Lauren (she was 10.5 lbs and it was a huge surprise, I almost lost my uterus from hemmoraging and I did loose a lot of blood leaving me anemic and tired for quite sometime). I didn't want to repeat that cesarean story. So I was on an exercise program and a diabetic diet (even with negative glucose tests) to control Ian’s weight. I was rather nervous the first 12 weeks as I had had a miscarriage a few months prior. We were elated that Ian was a boy when we found out in the 5th month.

My delivery was via successful VBAC, it was the kind of birth I’d always wanted. I got to watch in the mirror and pull him up to my chest. I was so peaceful with his arrival and his homecoming. He was born almost at 39 weeks and was 8 lbs 2 oz. Everyone kept exclaiming “what a big baby!� I just laughed.

Nothing unusual at the hospital but that his frenulum was cut to improve latch on and the dr. said he may have a speech impediment as tight as it was.

I did notice that Ian was not very social (comparing to Lauren). Didn’t like to interact for extended periods, didn’t smile until month 4 where Lauren smiled at week 4. Didn’t blab alot , didn’t enjoy cosleeping or cuddling, didn’t like sudden movements or rocking. He cried w/ urgency, not colic, just frustrated cry. He slept a lot, through the night, during the day etc… I just chalked all that up to that he was a different child. Maybe boys were slower to develop or less social……maybe Ian was analytical, or just not as boisterous. He seemed to be attaching to me just fine.

He always seemed a bit behind on milestones, cooing, teething (got those at 11 mos, playing w/ toys, walking (walked at 17 mos), speaking or gesturing. He would just get angry and we would try to figure out why. Sometimes he would cry and when we couldn’t figure it out it his anger would escalate to screaming. But the actions were always very controlled. No tears involved.

I enrolled Ian at MDO at 19 mos. My dh travels a lot and I need me time, so he went to the same preK/MDO as Lauren. I thought it would benefit Ian as well. He screamed a lot, would throw tantrums and did not socialize. I just thought it was Terrible twos. Seperation anxiety which is magnified by the fact my dh travels so much. But The terrible twos lasted a long time. The following spring around 27 months it just didn’t seem to be getting better so I began reading about discipline ( I was informed by some they thought he was just spoiled and acting out). It was hard not to question myself with all the tantrums. I started time out in March. I read to increase the time in time-out until the child responds. He was still in his crib so I did time-outs there. He would work up to screaming for an HOUR and he began getting aggressive with me. Biting, scratching, hitting, pinching. We were all unhappy.

In another mom’s group there was an Occupational Therapist that had worked with ECI in the past. I had posted on the board that dh had been gone for weeks and I was at my wits end. I couldn’t work out anymore because the lady at the gym daycare wouldn’t take Ian due to the aggression and screaming, the preK was saying he was getting worse with the time-outs……I was ready to go to bed and scream myself or put myself into time-out forever. I felt more incompetent.

She asked me a lot of questions and then gave me a book called the “out of sync child� for me to read…….a lot of it rang true, some of it I thought "everyone has this disorder to an extent". I was frightened, in denial and relieved at the same time. It’s not me, It’s not that he’s a brat, it’s not my imagination, BUT can it be that he may not be “normal?� That he may have “struggles� with things like socializing and school……the little things. I was a bit depressed to be honest. But I called ECI, I wanted feedback, opinions from professionals, I needed HELP.

The book did help me to SEE when he was screaming…..when people came into his “space. I noticed he would get anxious when kids would come near, adults would speak to him. He would close his eyes, cover his ears in restaurants etc…. He began developing fears, water, gooey things, sand......which he used to enjoy.

I’ll post another entry about my experience with ECI (Early Childhood Intervention.....now referred to as Infant and Toddler Intervention Program or ITIP). I'm posting this long background so that it may help someone in the future if they have concerns.

Julia
12-12-2004 Sunday, 02:31 PM
I called ECI. Thinking “I am probably wasting someones time, but now I just want to know if Ian has this Sensory disorder� Wanting to hear from a professional “he’s just fine�, “no problemo� “he’s just immature or young�. .

They came to my house and played on the floor with him, me there interacting too. At the end of the playtime they said “yes, he does qualify for services�……….My heart sank, but I thought “okay, tell me more�. They wrote up a report and we discussed goals for Ian. He qualified for therapy under Sensory Integration Disorder (tactile). I read up, and bombarded the therapists with questions weekly……these ladies are awesome. Plus I have two friends that are OT’s and they help with those questions too.

We came up with a therapy schedule. Twice a week, once at home and once at school in a social environment. They started therapy in July.

By SEPT I saw a huge improvement and they kept saying he’s doing so well. The school said ‘he’s doing so well�, people I saw at Lauren’s soccer practice “wow, he’s matured so much�, “what a sweetheart�. I started thinking “well that’s that, he’s fixed�. YAY, now we can stop this therapy……I figured it was probably intrusive for the PreK. The therapists assured me that he should continue until he was 3. I was thinking, “well I guess that can’t HURT right?�. The school assured me it’s okay.

I can’t believe how much we are both learning. Our home is a much happier place. More words, playing in the pool, tolerating people, making eye contact, singing, etc…. But it is all so inconsistent.

I’ve met other parents w/ ECI, see common traits and it’s comforting to have support. Lauren’s teacher’s son was treated for SI and was later diagnosed with Asperger…….oh no… I realize that this journey may continue to change.

So they started preparing me for the assessment w/ the Independent School District. ECI will only work up to the 3rd bday. ISD came to my house, filled out paperwork and we set up an assessment at the PPCD school near my home. This was in OCT.

I’ve done research on Ian’s “quirks� I realize some of them can be normal toddler behavior some can be construed as OCD, some as Autism spectrum. I had to stop reading so much.

The assessment was in Nov. We went in, played, I was in the room, his ECI therapists were there (he’s formed a relationship with them). I really thought “now, they are going to tell me he’s on track, no problem�. They ended up telling me he qualifies for services under the Speech Impairment disability. Disablity….it’s such a strong word. I kept a good face, thought “okay, this must be the ticket�. I don’t stay in denial long, but as you can see it finds me.

This week I met Ian’s new teacher and new speech pathologist, saw his room, the library, the play area. It’s a beautiful school with wonderful amenities (our tax dollars at work…..it’s at no additional cost to us). They are doing some great things for us, preparing picture books and schedules for me to use over Christmas break to prepare him for starting his new school in Jan.

I’m still dealing with the idea that he’s in special education, that he’s been labeled with a disability and that he’s struggling w/ little things, but I know that we are doing the right thing, that he can get “better� and this journey may have “bumps� …..he may do great this next year, may reach his goals and they may say he’s ready for public school kindergarten in two more years…….then they may say he needs to be reassessed next year. He may be diagnosed with yet a different label or disability.

My goal is to just take it a step at a time, not get ahead and to support Ian. It may take private school, more therapy, more special education and I’ve not even ruled out that it may take me getting more training so I can homeschool him………I’ll do whatever it takes and whatever works best for Ian.

I still have heated discussions with people that try to tell me “Ian’s just fine�….In-laws mostly. I LIVE with him. J But it’s frustrating to have to explain things and defend our choices. More important than Ian being "labeled" is the fact that he's happier.

But like that article about “Holland� implied……I’m learning my way around and my love for my son gets be from point A to point B.

I know this is probably hard to read, my thoughts are rambling out of order. lol

michelles
12-12-2004 Sunday, 06:05 PM
Good for you to face this head on and get your son the help he needs. I used to be one of those people who would roll my eyes at those kids who would have meltdowns in the grocery store. "Can't she control her kid?" After speaking to other moms with children of similar disorders I am more educated about the issue and realize that their behavior is not always something you can control. I have learned to be less judgmental not always knowing the whole story. Thank you for talking about your son's ECI - this is something new to me.

QueenMarsha
12-12-2004 Sunday, 06:12 PM
not hard to read at all. and in a way just like you it is hard to realize that our children are in special edu. i mean they do wonderful ones. but it is hard to think back and look and see how you got to that point. every day i find something new that i love about my son just lik eyou. something that is so unique and spcial about him. i like your story. very informtive. thank you for sharing!

jessjillbolyer
12-13-2004 Monday, 08:55 AM
I agree thank you so much for sharing. It wasn't hard to read at all. We use ECI as well and LOVE them so much. I don't know what I would do without them to tell you the truth.

I think its very hard whenever they first tell you what the issue is our you get a label, but it does have to sink in. I am learning to not be so defensive to Jakob's doctors. Sounds like your son is doing very well though. I will be happy with every little thing Jakob does and the things he doesn't do I'll be ok with that too.


Thank you for sharing your story. :hug

Julia
02-28-2005 Monday, 11:53 AM
Bumping up for FireWife - a little about our journey with Sensory Integration therapy and where we are now.

The Cook
02-28-2005 Monday, 12:25 PM
Julia, thanks for sharing your story. Is it just my screen or is there a weird font that shows up through out the two posts above. Maybe I need more caffiene.

Julia
02-28-2005 Monday, 01:17 PM
No it's my the site translating my Macintosh program. Sorry - kinda wierd.

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