One stay at home moms journey to find herself again

Saturday, February 6, 2016

Wesley Update.. .my baby is almost 4.

Thought I'd post an update on Wesley, as it's been awhile.  He will be 4 in just 90 days.  That's is just unbelievable to me.  How are we almost at 4?   Wes is solidly in the midst of 2 day a week, half day, preschool.   We still have our "no go school" tantrums, where he refuses to get dressed, rips his clothes off, hides, etc,  before school but we are to the point he rally's and will end up walking in like a big boy.   There's also no more tears.  The other day we had a huge victory; his favorite teacher "Miss 'manna" wasn't there, this would normally cause the worlds biggest tantrum/crying episode... I am pleased to say he walked in, said "Bye" and it didn't phase him that "Miss 'manna" wasn't there.

We're tossing around the idea of switching to a 4 day a week preschool next year, in hopes of further help speech and social issues... my one big concern is can he handle that.  It would mean leaving our preschool that is partially special needs to a more 'mainstream' preschool.   I don't know if he can handle that.

Life seems easier now than 6 months ago, but maybe we've just grown accustomed to it?  There's still crying during haircuts, screaming during bath time, not wearing certain clothes/socks/shoes because they touch his wrist or are itchy; not eating certain foods because they are "hot" or "spicy"  Meals are like Olympic events...We try different food combos/games/seating all in hopes that he will eat..   I hate meal times.  Sometimes I give up and let him eat in front of the Tv because it's the only way to get him to eat, which means he won't be up 3-4 times a night hungry.  He normally will eat for Josh but he isn't here all the time and when it's just me it's a battle.   Some may judge... Think I'm lazy... I don't know, maybe I am... I know I'm trying to survive, I know I am trying my hardest.. I know I'm trying to get him to eat and after raising 2 girls, I know dinner time shouldn't be this hard.  I hate dinnertime.. it makes me want to hide.  The same food we had last week is suddenly too spicy.. sure, I could force him..but then he will gag.. then he'll throw up... at the table.   That stinks.   I don't know what to do and getting help hasn't been easy.

I advocated hard for occupational therapy at school and they finally tested him but since he showed nothing at school, they won't provide help.  Talk about defeat.   They suggested maybe he was "Pulling the wool over my eyes"   Which, frankly, didn't go over well with me.  They said since they don't notice anything, they won't help.   They don't bathe him at school; They don't wash his hair; They don't cut his hair or change his clothes.
We have an appointment with a developmental specialist this summer..we've been waiting almost a year for this appointment... I hope it sheds some light on things.

Speech-wise, his language has grown in leaps and bounds.   He's now actually trying to say words.   His speech sounds like someone with a hearing loss would sound, but the words are THERE.  Few can understand them, but they are there and that is HUGE!   At this point I think the issue is that his palate doesn't work.  Which would mean another surgery.  The palate not working properly would explain his pronunciation problems, along with the fact his upper lip doesn't work properly (doesn't fully close and touch the bottom lip)   At this point he is too young to test and see if the palate is actually working so we wait, and I'm okay with that.  After the last palate surgery I'm in no rush to do another.

At the moment we're dealing with a hyper focus issue on smoke detectors.  We recently replaced ours and it's caused a big drama.  Wesley hates this house and the "Fire larms" .. Sleep is a battle because there's a "Fire larm" in his room.

We also made the decision to get Wesley a blood test recently to see if the certain triggers were due to allergies..inducing asthma or real asthma.  The blood test came back to no allergies on certain triggers so we are dealing with asthma.  Knowing for sure was huge weight off my shoulders.  The clarity.  Real true clarity in dealing with a special needs child is worth it's weight in gold!

I haven't posted much in the last months as I've had a couple "Nothing is wrong with him" "he is normal"  "Being dramatic' issues go on and I Haven't felt the need to stir the pot any so Thanks for everyone's support.  We've been surrounded by amazing friends, new and old,  who have been such a support to us in the past 3 years!    Keep us in your thoughts and prayers as we are in a "lull" time but that could quickly change in the next year.    

4 comments:

Darcee said...

I loved reading the update! I am so proud of you, Erica. You are the best advocate for Wesley! Keep on chugging along, Mama. You are doing GREAT!!!

Jessica said...

I'm so sorry people would go so far as to say you are making all this up. Have you tried getting home health OT to come evaluate him? They listen to reports of what he does at home. Noah's sensory issues weren't near as serious as Mr. Wesley but I remember some days he would have such bad meltdown at nap time that I had to hold him and partially restrain him. He started getting OT for developmental delay but they mainly focused on sensory activities. They gave us a brush and taught us deep compressions. That combo was a lifesaver.
And I've heard people tell me I was exaggerating, maybe it was a problem with my parenting because Noah didn't act like that with them, I need to just discipline him, etc. and it's tough because after a while you start to think maybe it IS you. Now we are back in the middle of sensory hell with Isaiah and it makes me cringe knowing what were in for.
I have some sensory resources and other things that help us get through it with Noah if you'd like.

My Life as an Army Wife said...

Thank you Darcee!!! That means a lot!

My Life as an Army Wife said...

Jessica,

It's very frustrating!!

If we did home health OT it's through the people that run his preschool, they are the only ones that do it, and since he's 3 now, he's "the schools problem" *Not their wording but the jist is the same* and the school obviously won't help us.
We did OT through the hospital for a bit over the summer but we'd get 2-3 sessions in and then have to renew for insurance purposes, so that' be a 2-3 week wait. Very frustrating.

I've heard the same thing; "Well he doesn't act that way here" and it's so frustrating. I feel after raising 2 girls to 7 and 8 years old I can't be totally clueless. It doesn't help any..just makes me feel worse!

I'd be interested to know what resources you have!