I guess I should introduce myself
ckmommy
member
Hello,
I'm new to this, please bear with me. My son is in the process of receiving evaluations for an Autism diagnosis or other spectrum disorders. He had his speech evaluation last week and speech therapy was immediately recommended. He is having his OT evaluation this week. It has already been noted he will most likely need food therapy (?) and he is getting his eyes examined tomorrow on the suggestion of the therapist. There are sensory issues, receptive speech delays, etc. We are on a wait list to get a screening for the local developmental preschool program but they are booked out through April. I'm getting very overwhelmed and my husband doesn't know how to process everything as he is getting all information second hand and thinks I'm making things sound worse than they really are.
No one but one of my friends know that we are seeking assistance. I don't know what will come of any of this but so far with the information given, I feel like I've let my son down. In regards to my son's behavior my in laws and father always give the excuse of he is 3, he will be fine, stop worrying, there's too much hype about disorders in children, etc. I wasn't worrying, until this past week.
I hope it is ok that I post here. If not, I apologize.
Re: I guess I should introduce myself
Of course it's okay that you post here! Many of us have been right where you are and know how hard it is.
Don't beat yourself up. You're on the road to getting him the services he needs, and that's the most important thing. This is a lot to process and it takes time to adjust.
I know it can feel like every second you're not Doing Something is wasted, like you have to get therapy started right.this.second or you're not doing right by him. That's panic and not reflective of reality. This is a process, it takes time, and it OUGHT to take time to make sure he's getting the right thing, and not just the first thing to come along. It took us about two months of research and interviews after DD1's evaluations to choose a core therapy and a private therapist (in addition to some school district services). You have to use your resources wisely.
My DD1 was dx'd with autism at three. The hardest time for me was between when we knew something was wrong and she needed to be evaluated, and actually getting the evaluation and results (several months). We didn't tell anyone we were having her evaluated, either -- if nothing was wrong, we didn't want people to know; if something was, we didn't want people second-guessing us during the process and telling us everything was fine. Which is pretty much the default reaction that everybody gives you -- "all kids do that," "you worry too much," "every kid matures at their own pace," etc. It's really hard to fight that when your own impulse is to want to believe everything is fine, too. But you're past that point and in the hands of professionals, and that's where you need to be.
If you end up with an autism dx, I thought Making Sense of Autism Spectrum Disorders by Dr. James Coplan was the most helpful book I came across, and I read quite a few of them.
One thing that was helpful and practical for me was to start a notebook. Every day I wrote down what I was doing in regards to contacting therapists, filling out and returning paperwork, who I talked to, what we talked about, emails, phone #s, etc. I created a file box, scanned evaluations, and put my energy into working rather than worrying. When I felt like things were taking sooooo long to get rolling, I looked back at that notebook and it reminded me of all the work I'd done and how I really was doing all I could do for her.
Give yourself time. It gets easier, emotionally. This is a great, supportive group of moms who have kids with all kinds of SN; plenty of us have kids on the spectrum. We also have an autism FAQ (linked somewhere on this first page, I think) that will hopefully be useful to you.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
Thank you. I feel like we are moving forward ok and doing what we can.
Unfortunately my husband's job has no real leeway for him to attend the appointments and I'm trying to be as straightforward as possible. I've given him the same paperwork I've been given and I've tried to explain how things have gone but it doesn't seem to matter. He is even questioning whether or not our son needs speech therapy. I don't know how to get him to understand that this isn't a game and he needs us to do whatever we can for him right now.
I'm currently not working due to an on the job injury last year and when we realized our son was having some challenges we decided it was better for me to continue to stay home with him vs. putting him back into a childcare situation that was a horrible experience for him. So I'm the primary care giver along with everything else going on. I'm really trying to take it all one step at a time and look at things week by week but boy I'm exhausted already.
My husband is the same way. No relaying of information to him is ever enough or ever clear enough. He's figured out a way to make it to some of the appts and since we started with EI, a few of the evals were done at our home in the evening when he was able to be there.
{{hugs}} Parenting isn't easy and when our kids make it a little more "interesting" it gets even harder. It sounds like you're doing everything you can right now so don't beat yourself up. Once the evals are out of the way and a 'battle plan" is established by your son's team, it will make a little more sense.
Good luck and welcome!
Welcome.
I would video record the appointments. We use a flip camera. I set it up on a counter in the exam room. It is not as important to get the video right as long as the audio is recorded. Another lower tech option is a 25 dollar voice recorder from walmart or use a smart phone if you have one.