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Forum: Children with Special Needs

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  #1  
April 17th, 2009, 03:56 PM
Daisyfields's Avatar Platinum Super Mega Mommy
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My name is Chantelle... I am not new to JM, just new to this board. I don't know why I haven't come here for support "yet"...but I guess it was one of those things that I just hadn't done but I feel like I need an outlet & support for my situation.

I am a SAHM, I have 4 boys, 1 is 11, he is my DSS, doesn't live w/ us. I have an 8 year old from a previous relationship, my DH & I have 2 kids, Cooper, who is special needs, will be 3 on May 2nd of next month. And then I have a 15 mos. old son too. Very busy.

Cooper is my "special" guy & has been since day one. My pregnancy was weird. I have a bicornuate uterus & had a lot of bleeding throughout my pregnancy. But nothing was shown to be an issue in the ultra sounds for Cooper. I had no prep on what I would have to do the next 3 years + of his & my life.

When Cooper was born, immediately they said "what's wrong w/ his foot?" (nurses)... he didn't pass his hearing screening...and as time moved on, we discovered that he had torticollis, low-hypotonia, developmental delay in both fine & gross motor skills, speech delay (obviously being legally deaf)... Cooper had many tests done, including genetics, we made sure before we had another child that this wasn't a result of me & DH's genetic-combo. It wasn't/isn't.
Cooper's brain is fully functioning, he doesn't have brain damage, MRI & CT scan ruled that out. He's about the same size/weight as my 15 mos. old right now, give or take 1 pound & an inch in height.

Cooper does hear now, but is still legally deaf. We've done the ASL w/ the speech thearpist. Worked closely w/ the OT & PT's for his developmental delay & his fine/gross motor skills.

Today, my DH & I had a meeting w/ the school to transition Cooper from E.I. into the public school program. Something I have no real choice in, unless I chose NOT to continue his therapy & just let nature take it's course. It was decided that he's at a 17-19mos. old level in his fine/gross motor skills. His speech is more or less repeating after people, not understanding what he's saying. And he falls a lot.

Oh... almost forgot... Cooper has "seizures/episodes"...something we've yet to figure out what & or why this happens. Since he's been little, Cooper would have this "episode" where he wouldn't lift his head, become lethargic, vomit, wouldn't move & would drag his head & wouldn't open his eyes & if he did he would cry.
As of recently, he's started to become vocal & say "head hurt, help"... which was HUGE for us. We didn't know what was wrong. He'd vomit, get sick & we had no idea what was wrong. The MRI & CT scans said he was fine but we knew something was wrong. His neurologist isn't doing a good job...for Cooper. So I've decided to find a new neurologist at another hospital & get him into the pediatric headache clinic to rule out migraines.

Cooper can't handle overstimulating environments, large parties, Chuck-e-Cheeses, Rainforest Cafe, loud fireworks, etc. He likes those things but he has an "attack/episode" shortly afterwards.

Back to the meeting today. We...well...the therapists decided on having Cooper go to pre-k w/ the special ed. teachers for 2 half days per week, w/ constant therapy to work on improving his delays/problems. I am so nervous about this. I don't like it at all. I am scared that they wont take care of him, he'll have an "episode" and they wont be able to recognize one & brush it off, and it will jepordize his health. I already told them my concerns & told my DH that "if" this becomes a regular occurance, more than usual, I'll stop it all together & pick up every book that I can on his problems & do it at home. I refuse to watch my baby boy become a vegetable b/c the "system" decides that at 3, they have to go into the school system. I don't like the idea of Cooper being in pre-k at 3, I find that age to be WAY TOO YOUNG (JMHO), my other boys didn't go to pre-k, they went to kindergarten. Then again, they weren't special needs. I just don't see him doing well. He's not potty trained, the kids there aren't going to understand him. The list of concerns just goes on. I could write a book about how I feel but I'll try not too.

Cooper & I have a special bond from this, although in a way, not how I imagined it to be. I am sure that lots of you have read "Welcome to Holland"... I've come to accept Cooper for who he is, and I enjoy him, but I feel like "why me?" a lot & my DH just doesn't get "it"... he either thinks that Cooper is fine & he hates the words "special needs"...he thinks that means so much more.

After having Cooper, I got pregnant when Cooper was 10 mos. w/ my now 15 mos. old Teighan. We call him "T.T.", Cooper & T.T. are like twins, they are best buddies too. Sometimes I feel guilty/selfish that I had another child b/c I have a little guy who needs so much more time than the average child. Also, I had serious P.P.D. after having Teighan, he was colic & is STILL on Alimentum formula (he's starting E.I. this month for his feeding/allergy issues).

My entire family is in denial of what I do, how I do it & how much time it takes to care for these children, especially Cooper. The biggest obstacle is finding reliable sitters for when I need to bring Cooper to his apt's or finding a sitter so I can do something w/ out Cooper. My DH works a lot & not close, never home. I am basically an active SAHM that doesn't have help, period.

My 8 year old hasn't dealt w/ this well either. He went from being "the only child" to having all these siblings, and one of them needing LOTS of extra attention. It's turned my 8 year old into an aggressive child who likes to secretly push or tease Cooper. I now have him (the 8 year old in child therapy). I too...am in therapy...I need it...obviously, and that's the ONLY time I get to myself. Sad

So that's it in a nutshell... I realize that I wrote way more than just an intro, but it's where I've been, where I was & where I am now & how I am proceeding.

I'm blessed in many ways, I am grateful & humbled to have a child like Cooper. I also realize that I have it a lot better than "most" families w/ special needs kids. I've seen kids in wheelchairs w/ breathing tubes, my heart aches for them. I know things "could" be worst. I guess for everyone, it's a different level of special needs.

I was told that Cooper would never walk, talk or hear... so far, Cooper has proved all the doctor's WRONG... and I am determined to have my DS Cooper in a NORMAL classroom one day, and look back & say "I defeated the odds, my mom didn't give up on me!" I hope that I am doing just that.

If you got this far. Thank you so much for the time it took to read my endeavors. I look forward to meeting you all. Finding out what your situations are & how you get support for your times of stress.

We're obviously here b/c of a very special situation. I am not thrilled that I am involved in this sort of "situation" but as the story said in "Welcome to Holland"... even though the plan was "Italy"... eventually..."Holland" was just as beautiful!


~Chantelle
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  #2  
April 17th, 2009, 04:18 PM
Ditzzy's Avatar Stupid Lamb;)
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Hi Chantelle, Welcome to the SN board! It sounds like you could use this board too. ((Hugs)) to you! It is so hard not knowing what is wrong with your child. I don't blame you for seeing a new neurololgist! I also don't blame you for not wanting Cooper in pre-K at 3. You are his advocate and it sounds like you're doing a great job speaking for him. You are his Mom, You know him better than anyone, If you want to take him to get a 2nd, 3rd, 4th or 50th opinion for neurologists or whatever, then do it! The same holds true for school.

As for having another baby and feeling guilty, it's normal. Please don't feel guilty about any of it. You are doing the right thing by taking your 8 yr old and yourself to see someone. That's great! I think we could all use a therapist at times.


Welcome to Holland is highly recommended for anyone with a SN child! Puts things into perspective.
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  #3  
April 18th, 2009, 07:58 AM
iamkc's Avatar Platinum Supermommy
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Hi Chantelle! Welcome! I've just joined this board, and the ladies here are SO understanding! What most people would see as whining, these women "get" 100%!!! I feel like we're all very lucky to have this board.

I haven't read Welcome to Holland, but I have it, for whenever I get a tiny chance to do anything besides take care of kids.

Cooper's situation sounds so scary. I'm so glad that you're in therapy! Having all the outlets you can get will help you tremendously. I wouldn't hesitate to get endless opinions on Cooper until someone figures out what is wrong! I'd fire your neurologist-sounds like s/he might be a bit complacent. If the neuro knows that Cooper isn't being damaged by these episodes, s/he may have already decided that it's no big deal and that Cooper will outgrow it. I've overheard a few docs talking about kids this way, and I'm appalled. That is completely abnormal behavior, and he deserves to know what's going on. Everyone's quality of life will improve.

You're obviously a good mom, trying so hard to keep on top of all of this. Your story sounds very similar to ours-not the details of Cooper, but the doctor visits, the family, and so on. I just hope that you get help that you need. Often, there are special sitters you can hire to help with your kids. There are volunteer groups through universities for students wanting to work in the medical field, often. I'd check your resources. There has to be someone who can give you a break-it sounds like Cooper could be left in someone's hands who is very aware of his situation.

(((HUGS))) Vent. A lot. It helps.
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