[lizalourx]

Hi, I am so glad I found this message board. I am going to spend some time reading through old posts but for right now need to know if I am in the right place. My son was premature. He has been through speech, occupational and physical therapy. He just turned four. He was discharged from all except occupational which honestly I sort of stopped because I didn't click with the therapist. I was told he had sensory issues and that is very apparent. I have also been told he could be on the spectrum of autism (those drs who have said this say it would be a mild case). He hates bright lights. He doesn't like his hair brushed or teeth brushed. He hates loud noises or noisy places. Everything is a struggle. I just recently got divorced and I am just so overwhelmed. He hates anyone he doesn't know to say hi or talk to him. If he knows you he completely connects with you, eye contact and sweet and loving (which makes me think he is not autistic). He is very bright, his speech therapist said he scored cognitively the second highest she had ever seen in her career when he wasn't talking. He gets upset sooooooooooo frequently. I am at my wits end. I am 37 and feel like every day years are being taken off my life. I am exhausted. Everything is a struggle. Is this normal with sensory issues? Thanks in advance

[lizalourx]

Hi, I am so glad I found this message board. I am going to spend some time reading through old posts but for right now need to know if I am in the right place. My son was premature. He has been through speech, occupational and physical therapy. He just turned four. He was discharged from all except occupational which honestly I sort of stopped because I didn't click with the therapist. I was told he had sensory issues and that is very apparent. I have also been told he could be on the spectrum of autism (those drs who have said this say it would be a mild case). He hates bright lights. He doesn't like his hair brushed or teeth brushed. He hates loud noises or noisy places. Everything is a struggle. I just recently got divorced and I am just so overwhelmed. He hates anyone he doesn't know to say hi or talk to him. If he knows you he completely connects with you, eye contact and sweet and loving (which makes me think he is not autistic). He is very bright, his speech therapist said he scored cognitively the second highest she had ever seen in her career when he wasn't talking. He gets upset sooooooooooo frequently. I am at my wits end. I am 37 and feel like every day years are being taken off my life. I am exhausted. Everything is a struggle. Is this normal with sensory issues? Thanks in advance

[cmmelissa]

To me is sounds like he's exhibiting a lot of sensory issues. There are some great suggestions on the board in dealing with them, and I'm sure some of the members will be along shortly to offer up advice. You might want to try a different OT, maybe one that has experience with sensory issues?

I look forward to getting to know you better, keep us posted on his progress.

[mom_ladybug]

(((Hugs))).  You have a lot on your plate right now.  I can see why you feel so overwhelmed. 

Just as you feel overwhelmed with everything going on, so does your DS.

There are 2 pieces to your post that I would like to address.

The first is your sanity.  Deep breaths.  You have been through a lot lately - some good, some bad - all stressful.  I would recommend you find a counselor to help you deal with the stress you have just been through and the stress that is coming.  Your son REALLY needs you right now to feel stable and that things will be ok.  If you are frazzled, he will pick up on it.

Second, your son does sound like he has some sensory.  I posted in the notes below (Long sorry and new here...) in some depth about how to get your son evaluated.  I recommend you read both these threads.  The way you describe your son's behavior also sounds like he has autistic tendancies to me as well.  Since he can connect and socialize with you and people he knows, then it means he can.  However, it seems to be something that is hard for him.  You are looking at the milder end of the spectrum most likely (Asperger's or PDD-NOS).  There is a huge wait list for this type of evaluation.  Go ahead and make that phone call. 

Once you know WHAT you are dealing with, you can develop a plan.  You will also know where you need to parent with some tough love and where you need compassion for your son.  It will help the stress levels for both of you.

I know this is not a fun post to read.  But I hope it helps.  Welcome to the board.

Caren

ETA: Melissa is spot on.  For sensory issues, the most important therapist is your OT.  You MUST have a GREAT OT who specializes in sensory.  Some are really good, but don't get your child.  You are building a team of support for your son.  Just like a job - some people you click with and others you don't.  Find one that clicks with your son.

[lizalourx]

Thank you both for your reply. I actually found a place about an hour away that specializes in Sensory Issues. I took him for an evaluation and according to them he definitely has sensory problems. They are recommending 1-2x week OT. I am waiting to find out whether my insurance will pick up any of the cost. I also am looking into OT through the public school system which down in Florida is where he would get treatment free after 3 years of age. It just seems often that not all OT's have the training with sensory. His OT when he was in Early Steps knew of it, but wasn't trained in it. The place I just took him appears to have therapists with extra training specifically geared toward that. We are also dealing with a much more serious problem. He was born with a congenital heart defect and at our last cardiologist appointment found out his condition is worsening and we are now looking at the great likelihood of heart surgery as a child vs. what they originally thought as an adult. We are going to Miami's Children's Hospital in 2 weeks for a second opinion. I know that all his upsets and stresses throughout his day can't be good for his blood pressure or heart. I find that I really try to appease him right now so that he remains as calm as possible at least until I get the second opinion. I am so tired and stressed. As far as him maybe being on the autism spectrum...it is definitely possible. I just don't think that the label is that important to me, at least right now. I think if he has something it would be on the mild end and hopefully he will just be a little different or quirkier than others and won't need to believe something is wrong with him. Thanks again for the warm welcome. 

[mom_ladybug]

I am glad to hear you had a good evaluation.  Sorry to hear that he is SPD, but at least now you know.

As for the heart stuff.  I have tetrology of fallot.  And I'm old, so we did not have the advances they have now.  I had surgery at 6 weeks, 4.5 years, 10 years, and 29 years.  I recognize that your situation is different, but I can speak from a kid's perspective.  How he feels about surgery is dependent upon how well YOU sell it.  My parents really sold the surgeries:

The doctors are going to fix your heart so you can have lots of new energy instead of being tired all the time.

You will be able to play longer with your friends.

How cool is it that YOU get to have this done.

You get the idea.  To kids, it's just one more thing parents make them do: clean your room, eat your vegetables, have open heart surgery, etc.  But if you act like it is the end of the world and baby him, then it will be to him too.

You can email me through the profile if you need to.

Caren