I feel so lost since my son was diagnosed with Apraxia....

Stephanie - posted on 02/26/2017 ( no moms have responded yet )




A little introduction about me and my son: I am a 28yo single mother raising my son who is 5yo now who was diagnosed with Apraxia at age 3. I'll start off by saying it's been an extremely long, hard and lonely road to travel. I don't really have any family left except for my Mother who has been the only stable support system in my life through this journey. My sons diagnoses was a little delayed in my opinion and I wish I had been getting help for him when he first was exhibiting signs. His pediatrician at the time said that it was ok he wasn't talking at age two and that he would eventually speak, 2 1/2 rolled by and I realized something was going on, that is when I had to be very pro active and seek help, get a referral to a specialist in a bigger metro area ... and at three came his diagnoses. Since the diagnoses day to day task have been difficult, everything is much harder because my son cannot communicate on the level he needs to be. He has been in speech therapy at our local Dayton Childrens since his diagnoses, he goes one day a week (which in my opinion isn't enough) but my insurance will only pay for so many visits per year. His speech has improved a little but I still cannot understand a lot of what he babbles. He is in pre school this year and has an IEP, he also receives speech there. Im lost because I don't know how and what I can do on my end to ensure he develops into being able to communicate with peers and make friends, with kindergarten around the corner I am nervous. There are limited services where I live... there are only two businesses that provide ST/PT/OT that take my insurance in the area and they have a waiting list into the next year which is crazy to think that there are so many children out there needing these therapies. It was never like this when I was a child. A lot of people in my area are clueless to as what apraxia is and how it works.... like everyone knows about autism but hardly anyone knows about apraxia..how do you bring awareness to this? Why are there limited providers for apraxia therapy? It's just realities that are hard to swallow. My son acquires so much help it's physically draining to me to be doing it all alone. He still cannot dress himself, I have to dress him in the mornings and through out the day if he has accidents. I finally was able to potty train him this past summer (it was a VERY hard and long process requiring a lot of patience) but he still has accidents time to time, forgetting to use the rest room on his own so I constantly have to ask him to go or remind him to. I've been through a really long and hard battle with him and G.I. specialist because he use to withhold stool and that was very hard thing to get through and we still aren't completely over that hill yet. He had a bowel blockage that was so bad G.I. had to put him on a regimen for an immediate clean out which I had to do myself at home. He was on ex lax, and miralax for 3 days and had to be on a liquid diet to get him completely cleaned out, now that I have him cleaned out G.I. orders were to keep him on miralax so his stool stays soft, he has to poop twice a day. Apparently stool withholding is something that runs hand in hand with apraxia is what developmental pediatrics has told me. My son requires a lot of care from an adult and since I am the only one who can provide it to him I am not currently working, I have been unable to put my cosmetology license I received last april to use. I have no one to care for him when he gets out of school. His pre-school is from 1pm-3:30pm and that's not long enough for me to work anywhere. We struggle financially because of this. My son doesn't get disability or anything and I am not sure if he is even eligible with apraxia not really being recognized, autism qualifies for disability. I've tried to ask his doctors if there are programs in the area that help kids with apraxia, there arent. There are no support groups in my area for it either, no non-profits or organizations ..absolutely nothing! I just don't know how I can keep on what I am doing, it's starting to wear on my mental health causing a lot of depression but I make a choice everyday to stay strong for my son, I choose to get up ,wake up and conquer the day. Some days are good and some are just bad, the good days are fleeting and I try to hold on to them for as long as possible wishing everyday could be like that.

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