Don't know if I belong here...but I'd like to type it out

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carisathedreamer's picture
Joined: 12/18/09
Posts: 74
Don't know if I belong here...but I'd like to type it out

Hi everyone -
I'm Carisa, and my daughter is Clara. She's 8 months old (so big! :eek: ) and has been getting Early Intervention services since she was 8 weeks old for unlabeled "sensory issues." She's extremely sensitive to seemingly innocuous noises, textures, movements etc. It really affects her ability to get to sleep and stay asleep, and makes diaper changes, getting dressed and bath time super difficult. At first they thought maybe her nervous system was just really immature (she wasn't a preemie, but I was induced due to gestational diabetes, so she came before she was "ready") and it would improve with time, but is hasn't. Its just morphed into new and different sensitivities as she develops.

She had her Early Intervention assessment a few weeks ago (they do one every 6 months) and the review was today. I was totally expecting her sensory profile to be "abnormal" which it was, in basically every area. What I wasn't ready for was the news of a "significant delay" in the area of receptive language. I've thought for a while that its a little funky that she doesn't turn when I talk or say her name, but never really thought about it too much. Apparently she scored a 0 out of 3 on every marker in the category. So now on top of her OT, they are adding a speech and language pathologist and a developmental specialist, and right after her first birthday they want to see where she falls on the M-CHAT (autism diagnosis tool). I know she's way too young for any kind of formal diagnosis to be made, but obviously all of the early indicators are there, and they're concerned enough to bring in two more people to work with her.

I feel kind of sick. I love her, I'll love her no matter what, I've considered this as a possibility in the past and it never really phased me. But talking to the EI people and them bringing out the "big guns" just makes me want to cry. I just want her to be happy. I want other kids to be nice to her. I don't want her life to be hard. I know its good that's she's getting such excellent care, and will continue to if the outcome is what we think it is. I'm just scared. And sad.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

You absolutely overwhelmingly belong here. I'm Angela. I actually have 2 special needs kiddos. One is mildly autistic and one has severe heart problems, and we are now finding out he may have some brain damage because the oxygen is not getting to his brain (don't worry you will hear about him a lot since I talk about him the most). My almost 6 yo is the mildly autistic one and has sensory issues. He also struggled with delays and speech. He didn't even talk until he was 3. And then is was only one word here and one there. And to give you some hope (because there IS hope) he is in a normal kindergarten class and is one of the top 3 readers in his class. Although he still has sensory issues and honestly always will, he is getting to an age that he is starting to understand that it's sensory and is starting to work through some of it. He's finding ways to deal proactively rather than freaking out. If you had asked me when he was 18 months where I thought he would be at almost 6, I would NEVER tell you it's where we are now. So there IS hope. I'm so sorry you are going through what you are. You will find we are a close group of ladies. And honestly I could NEVER get through what I do without these ladies. Our kids may go through completely different things medically, but in some way every single one of these ladies understand the difficulties we go through.

Welcome to our group.

betsy0040's picture
Joined: 03/28/08
Posts: 121

Welcome Carisa! I second what Angela said, this is a great group of ladies and you are welcome to join us. I'm Elizabeth mom to Joshua who is 2 with a chromosomal disorder and developmental delays. He has been in EI for over a year and does OT, PT & speech therapy. He also has some sensory issues which have improved but the biggest one of his is tactile defensiveness with his hands, he won't touch certain textures. He actually has an Autism evaluation in April, we don't think he's on the spectrum but decided to do it anyway as all of his therapists said it can't hurt. I hope that we can be of some help and support to you. I think it's really important to know you're not alone, I know that always makes me feel better. And cry if you need to, I know I've had my share of tears over the last 2 years even before we started EI, having a baby isn't easy by itself so adding anything else can raise your stress level for sure.

Joined: 03/16/15
Posts: 53852

Welcome. I'm Jessica. My ds had an auditory processing delay, and speech delays. He has since overcome them for the most part. We did 3 years of ST. Now most people cant tell he ever had any issues, but i still see some auditory issues at times with him. And my dd had torticollis. She did PT from 2 months to 7 months (most dr wont diagnos it so early, but she had good head control and we have an awesome ped). Generally Tort leads to delays in crawling and walking but she crawled at 5 months old. I give a lot of credit to the EI we got.
Being in an EI program is a great start. The earlier they are getting help the better off they are in the end. I'm glad they are working so hard to get you guys going in the right direction. Yes it takes a lot of work and is overwhellming but its worth it in the end when they overcome obsticales.

Joined: 05/05/04
Posts: 435

Welcome to the group! It's not a fun group to join but it's SO helpful when things feel overwhelming!

My son was born with a cleft lip, had surgery to repair it at 4 months old, and since then had an extra tooth removed and will be getting braces on the top soon to help a tooth that's perpendicular to how it should be.

No matter what the problems are, we all know that it's not easy to have your child be "different" and worry about what the future holds.

Good luck with all these new changes - it sounds like your sweetie is getting what she needs to help her.

carisathedreamer's picture
Joined: 12/18/09
Posts: 74

Thank you guys SO much for the welcome, its really appreciated. I'm settling into the idea a bit more today and I'm really interested to see what the speech and language lady is going to do.

Its really nice to hear about other moms with kids in EI too -- I love the ladies on my birth board, but I never really talk about it over there because no one else has a kid with special needs. I'm really looking forward to getting to know you guys! Smile

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I do understand about not talking about it with people who don't have kids with special needs. I tend to gravitate towards people with special needs kids. Most of my friends IRL have similar problems. People tend not to understand how nearly your entire existance revolves around the needs of our children. And those needs are completely different. If can often mean isolation and can be very frustrating. Know we are always here to listen and encourage whenever you need it.

Joined: 11/28/06
Posts: 848

Hi and welcome! I'm Tanya, and I have two daughters - Alana (6), Madison (3). Both of my girls have respiratory issues, although Madi seems to be outgrowing hers (yay!).

This is an excellent place to vent, brag, discuss your concerns, and just chat! Sorry that you had to join this board but glad that you found us!

mujul79's picture
Joined: 01/22/05
Posts: 1843

Hi and welcome.

Feel free to read Heath's blog any time you can find a link on my siggy.

Heath has been getting services since he was 6 months old. Your so lucky to have been getting them for her from such and early age, EI is the key I 100% think to Heath doing everything that he dose.

Heath is a SIDS baby that we got back when he was 2 weeks (born a week late and almost 9lbs) and we went home with a healthy baby who's only issue was a bad latch, so it can be anyone and he also had infant sezures after his DtaP shots that started at 4 months old

It took 2 years of testing but we now know that Heath has Chiari Malformation of the Brain. He is hearing impaired and uses hearing aids, he also had devemental delays, low tone, club feet so he has leg braces, he has had 2 surgeries and #3 is going to take place in 4 weeks (I just found this out today), he has lung issues and OSA so he was on O2 for the first 18 months of his life, and is now on 3 meds a day to help, we are not at the end of our road at all and could be looking at more surgeries (brain and trach) in just a few months.

Heath gets ST, PT, and goes to a group class too, we also have a teacher of the deaf and are learning to do ASL. He will start in a special school for hearing impaired children in Sept. To get him in to the school he has to have a physiologist test him and we think at that time we are also going to be adding OT to his needs. He has always had a sensory disorder but his other issues where so life threating that we have not dealt with that part much yet as far as getting him help. He is over all about 10 months delayed.

Your not alone, many days my head spins it seems like each month something else is going on. I worry about other kids and all the looks from others, with the O2 tank, braces and hearing aids he gets more the I want to admit. But he is my world and so happy that he lights up my life when he says "lub me" each am when he gets up and wants a hug. As for the other kids they have been amazing, so many special needs kids are in regular school now that it is not a huge deal. The kids in Peter's class (Peter is my oldest, Heath is my 3rd) don't even care about his hearing aids they where a bit scared of the O2 tank and wanted to know if his legs where broken with the braces but after a quick show and tell of all his stuff they stopped asking Peter questions or saying "whats wrong with your brother" We just kind of said Nothing is worng he just needs some help and it is not diff then anyone who uses glasses because they need help to see. After they had more questions about if he was in pain and if he was happy more then anything else.

kerina313's picture
Joined: 09/10/05
Posts: 60

Welcome to the club! I'm Erin, mom to Emily who is a VATER/VACTREL child (heart, kidney & spine), Sarah my Trisomy 18 angel, and my twins - William (daredevil) and Samantha who has no corpus collasum (part of the brain that communicates between the two hemispheres).

I don't always get on as much as I'd like, but periodically I do and so I like to give advice especially to the "new" moms. I like you was on a birth board and when Emily was born and had to have open heart surgery at 8 days old, they just couldn't relate. Then when I found out Sarah had Trisomy 18 and probably wouldn't survive, her birth board was nice, but again, most couldn't understand everything that I was going through, although I got great support from Emily's birth board.

I think as a new mom we all tend to be a little more pre-occupied with our lives... we do live in the moment, so it's hard to give to others that may have more going on than just sniffles, etc. As the kids get older you'll probably find them more helpful than they were before. It just depends on the people.

I'm glad you found this group though. I think all of us here understand what it's like to have a "special" child. Regardless of their issue(s). I know when I first came here there were a couple of people who had heart children and their insight of what to expect was very helpful. We not only help when needed, we are here to share in any milestones our kids achieve.

I can't say that I have any sensory issues -- although initially we thought Sam might, but we think it was due to her lazy eyes and not seeing very well. She seems to be much better.

I just wanted to introduce myself and look forward getting to know you and Clara much better.