Wow, I haven't posted in over two months! Sorry! There really has been a lot going on since the last post. For starters, Colt spent three days in the local children's hospital for pneumonia which was exacerbated by his asthma. He spent about 8 days in bed. No playing, no reading, no nothing. Just sleeping. He was pitiful. However, he made a full recovery for the most part. We've done a few rounds of steroids since then, including this past week, when he was diagnosed with bronchitis again. Poor kiddo has terrible lungs. We're on day 6 of antibiotics, so I think we're on the mend.
Now, here comes the big part and also the part where I struggle the most. I am about to get very honest, consider yourself warned.
We recently saw a behavioral psychologist and she did a full analysis of Colt and his development. She took the reports we've gotten from our pediatrician, ophthalmologist, neurologist, geneticist, and our different evaluations for physical/occupational/speech therapy through our school system and reviewed them. She also made her own analysis. She asked us more questions than I could ever count, while observing Colt at the same time. She also had him perform some tasks or exercises to see how well he could complete them. Let me say, it's hard to watch someone critique your child. This lady could tell that Colt has some brain damage just by the way he moves his arms asymmetrically when trying to perform a difficult task. Luckily, we already knew this from a previous MRI or I imagine that would have been a bit of a shock. He still has very low muscle tone and very little reflex. Long story short, she diagnosed Colt with Sensory Processing Disorder. We already knew this was most likely going to be our diagnosis, but we finally got it. Our pediatrician thinks Colt also has a place somewhere on the Autism spectrum. Now the spectrum is HUGE, so we don't know much about that yet, but he thinks he's obviously on the high-functioning end, possibly with Asperger's. One day I'll get into that more, but for now, we don't know that for sure just yet.
Let me take a second and explain Sensory Processing Disorder. Sensory
processing disorder is a condition in
which the brain has trouble receiving and responding to information that
comes in through the senses. The condition used to be called sensory
integration dysfunction. This site has some wonderful information - http://spdstar.org/what-is-spd/
Basically, for some kids (and adults too!) noises are louder, smells
are stronger, lights are brighter, clothes are scratchier, etc... OR
they can have the opposite situation. They seek out loud noises, bright
lights, fast movement, etc. They can also have a little bit of both
situations. This is Colt. He HATES certain smells, to the point of
vomiting. He hates certain textures - clothes, food, etc. He hates
certain noises - the sound of fajitas sizzling, startling noises like
alarms, the toilet running, etc. However, he loves to swing fast, ride
rollercoasters, and loves loud music in the car. There's so much more to
it than this, but you can read up on it if you like. This is a fantastic link.
Now, let me explain why our diagnosis is important.
Colt gets physical, speech, and occupational therapies through our school system, like I mentioned before. HOWEVER, this therapy is very much education-based. It is designed to help him succeed in the school setting. This is fantastic, except it doesn't always help us at home. Please know, we love our therapists, we love the school where he receives the therapies, we have no problems with them at all. BUT, we need more. They see so many children and we only get 30 minutes a week. By the time you get Colt to focus, half of the therapy time is gone. So we've decided to pursue this and get him private therapy too. Say what you want to say, but this is my JOB. My job as Colt's mother is to do everything I can to help him succeed. The preschool age is CRITICAL for development and if I don't help him learn coping strategies and attempt to help desensitize him to the things that cause him to shut down, he may not ever learn. This can develop into a much bigger problem without treatment now.
So. We have our SPD diagnosis which allows us private therapies. FANTASTIC. When we left that first appointment, I made four more appointments for evaluations. Let me lay out the next few months for you -
April 8 - neurologist appointment (making another appointment then for a sedated MRI)
April 14 - speech therapy evaluation
April 22 - occupational therapy evaluation
May 4 - physical therapy evaluation
May 27 - allergist appointment (asthma)
June 15 - ENT appointment
July 6 - developmental pediatrician evaluation/appointment
July 13 - ophthalmologist appointment
Add in there Speech/PT/OT every week. Also, add in any of your typical pediatrician well or sick visits (we have many!), and ball practice and ball games because, maybe we're crazy, but we signed Colt up for baseball this year. Once we get the private therapy evaluations completed, we'll be adding in three more therapy sessions a week. That is SIX therapy sessions a week.
I say all this because I am a parent of a special needs child. It took me a long time to be able to say that term - SPECIAL NEEDS. That's a tough pill to swallow, but you know what? It could be so much worse. Colt can walk, jump, swing, play baseball, and talk (though I thought we'd never get there!) and there are so many people, probably people you know, that have it much worse. They have more appointments and therapies than we do. They need your support. They need to cry to you because it's been a long, tiring week. (Heck, that's any parent!) The thing is that they may not know how to ask for your help or your support. If you know someone that shares some of our struggles, let them know you're thinking of them. It means a lot. They probably desperately need your encouragement. You probably don't even realize the hours they spend researching, calling, planning, driving, going to IEP meetings, and advocating. It's exhausting.
Recently, I have gotten a little braver about sharing our struggles and our "labels" with others. A dear friend of our family approached me about it at church. She told me she was so proud of us for being able to "embrace" it. She is proud of us for not being in denial. You know what? That's not easy. It's NEVER easy to admit or accept that something may be different about your child. Who wants that?!? I don't, but you know what? That's my job as Colt's mother. I have always been someone that "writes" out my feelings. It has gotten me into trouble more than once. I still do this, but I am hoping my words can be more helpful these days. I get by through support of other mothers like me - reading their blogs, mostly. I have shared our struggles (and our many victories!) through my blogs from the start of our journey. If I can be a voice and help one person be brave and face an issue, then I have succeeded. There may be someone reading this that suspects their child may need a little extra help but are afraid to pursue it. If that's you, do it. Talk to your pediatrician. Send me a message! I can help you know where to start. I have jumped through more hoops and cut through so many rolls of 'red tape' it's crazy. Don't be afraid. Your child deserves it. It's your job - YOUR JOB! - to fight for them until they can fight for themselves. It's your JOB to teach them how to fight for themselves and it's your JOB to teach them that THEY ARE WORTH FIGHTING FOR.
Don't be afraid of the term "special needs". All I can see in that is that my son is SPECIAL.