Finding Cooper
I’ve been staring at my computer for a while now trying to figure out what to write about our meeting with the child psychologist. A few words come to mind. Acceptance is one of them. It’s time now. Time for me to accept this. Right now, today, Cooper has special needs. It may get better and it may not.
Honestly, the meeting probably had the best outcome that it could have. So, in that sense it was great. I’ll give you the facts first. Then I’ll give you the feelings. They vary greatly.
Cooper has significant delays in the five areas that make up the autism spectrum: communication, sensory, cognitive, behavior and social. His social skills with adults are at that of a 2 year old (Cooper just turned 3) and his social skills with other children are at that of an 18 month old. Another significant area of worry for the psychologist are Cooper’s fine and gross motor skills. She estimated that they are at that of an 18 month old.
Then, in the next breath, she said that Cooper’s skills are too advanced for her to put him on the spectrum right now. She is also hearing and seeing that Cooper is making improvements every day. And that is huge right now.
She sees quite a few signs of Apraxia but right now Cooper has too many other areas to work on before we can focus on speaking. Cooper needs to figure out his body first. He needs to figure out how to control his sensory issues. And then, we can focus on talking.
She kept saying over and over again, “Cooper is in there. He is bright and smart and social. Now, we just need to get him out.”
She recommended that we start OT right away, continue with speech therapy twice a week, and focus on getting him in a preschool in September.
So, on paper, the meeting was positive. She was positive. She said she will always tell the truth to parents. And she won’t sugar coat anything. And she thinks Cooper can improve and lead a normal life. But, her definition of a normal life differs from mine.
I asked her if she thinks Cooper will talk. She said that Cooper understands that communication gets him something. He understands that if he points or grunts or makes a sound he can get something. And that is huge. If he didn’t have that skill she would be really concerned. But, the scope of his communication may be with an ipad or a computer. Her quote was something like, “Apraxia is a tricky, tricky thing and you just never know.”
So, how am I feeling? Numb I guess.
At first I felt like a bomb had been dropped on me. How can he have delays in every single freaking area? And how can they be so significant? He is years behind in some areas? Why? Why the hell can’t it just be one or two areas? Why all of them? Why can’t he just be normal?
Then, I tried to process. The news could have been a lot worse. I can say with certainty that if we would have met with her 6 months ago the results would have been different. Cooper would have been diagnosed with autism. I have no doubt. Now, it’s 6 months later, and he is a different kid. Thank God.
And we have a game plan. Focus on speech and occupational therapy. I do well with plans.
So, as I previously said, it is what it is. Cooper has delays and special needs and all we can do is hope and pray for the best while continuing therapy.
It’s not going to be easy.
The appointments are going to be hard. The time management is going to kill my husband and I. Our jobs suffer. Our marriage suffers. The money we are going to spend on appointments is going to be sickening. But, there are no other options.
We have to find Cooper.
I know it’s hard. What a blow. It sounds like you got a really good psychologist there and I am thankful for that. And thankful for all the positives that she and you mentioned here. I do want to tell you that when Sophie started OT, it seemed to make everything else she was doing “click”. They did a lot of stuff with her to get her left & right brain working together. I think OT is a great thing! But I know adding MORE to your schedule seems impossible too. I am praying for you guys. You can and will do what your son needs. You were made to do it…you will still want to wish it all away of course, lots of times…BUT you will never regret giving your son everything you’ve got!
Such a blow. But it could be so much worse. I am hoping and praying that OT really does the trick. And makes it “click!”
Good luck OT has been so good for my son. We did private OT now he gets it through the school district twice a week. Just one foot in front of the other that is how we all go through life.
Well said!
The therapy sounds wonderful. He’ll do great! As far as his speech possibly being limited to electronic devices – give it time. He’s only 3. They can only tell you what they read on paper, but every child is different. No child can be limited. The only limit put on children, is the limit we put on them. I learned that with my son. According to the ‘professionals” he shouldn’t be reading, writing or even dressing himself at this point. He’s doing all of them. It’s a guessing game for these professionals. They really don’t know.
If I were to tell myself anything 14 years ago, it would have been: Stay hopeful and push him to do things. Don’t let him get comfortable with how he’s communicating now. Get him out of his comfort zone. Push him daily to work toward the goals you’ve set for him. It may be tough and tiresome, but it’ll be worth it. I guarantee.
Don’t be surprised or worried if OT doesn’t go well right away. Jonah started OT 3 weeks ago, and it wasn’t until his last appointment that he finally did something besides hide under a chair. The progress will come, and it will all click for Cooper. I know it is hard, but you have a good team of doctors and therapists who are there to support you. You’ve got this. (And when it all becomes too much to bear, which it may feel like now or sometime in the near future) do something to alleviate that stress, like throw snowballs at people you love. 🙂
Love, love, love this comment!
You poor thing! Hugs! If you ever need a friend, I’m here. I’m in and out of blogging but you can find me on Facebook (search Amber Perea– there aren’t many of us) or email (amberperea@hotmail.com)
I know you’ll find him. 🙂
My son gets and hour of OT and an hour of Language Therapy at school. We had him doing to private OT as well, but the therapist didn’t feel she was making any improvement with him. You’ve given me the impetus to seek out a different therapist.
A game plan is good. Feelings are hard. There will be days when you’ll feel blessed for the joy that Cooper brings to your life, others when you’ll end up in a heap on the floor because it all gets too much. One thing I’ve learned about diagnoses over the years is that they really are just words. They don’t change what is, they merely label it. Cooper is the person he is regardless, he’s the Cooper you love, and you’ll love him forever no matter what the diagnoses say or don’t say. Hang in there mama because you are doing an awesome job xx
I agree. One day at a time. You’re an amazing mama. Cooper will be found 🙂
Hang in there. Cooper is more than lucky to have you as his mama. You make a great team. You will find Cooper.
You will find him. You will. I promise.
Your comment brought the biggest smile to my face. Thank you!
I have no experience here, but did want to wish you well in your journey to find his voice. I wish I knew better what “well” meant, so maybe . . . maybe in addition to finding his voice, part of what I mean is some peace for you and yours along the journey, however or wherever it may be found.
Thanks Lady. I know exactly what you mean!
Kate, a couple of things to think about – have you applied for medical assistance in your state? I was against that at first, thinking I was taking from those that needed it more, but when your child has special needs, you need to do what you need to do and it can offer you supplementary insurance and pay for some of the things your primary insurance can’t. Second thing – given all those physical issues like low tone, etc., have they not also recommended Physical Therapy? It is really devastating to accept you are a special needs parent, especially one that has no answers but I think, in time, it helps make you stronger!
I’m going to email you back! We could really use help with the bills. I need more time and more money:-( I’ll look into it. And no to PT. Not yet anyways. It seems like a lot of kiddos get PT, OT and speech. Right now we are just doing speech and starting OT. I don’t know if I could handle anymore.