A breakthrough?

My sensory boy has been in speech therapy for about five months and it's been four months since his diagnosis. He has come so far from throwing himself face down onto the ground with no regard for safety because he was frustrated. This week has been a week of small miracles, in my book. We spent the weekend with my brothers and one of them said, "I never heard his voice before. He wasn't even making sounds the last time I saw him!" My brother has no children and doesn't quite understand Sensory Processing Disorder but the fact that he noticed a change was huge. We have heard many new unsolicited words this week including milk (mi mi mi), juice (ju), apple (which was very clearly apple), and thank you (na new.) A huge breakthrough has been the fact that he is saying people's names. He has attempted his brother's name, both of his uncle's names, and one of his friend's names. It's been a really good week and I have so much hope that SPD won't be a hindrance to his life, just a minor obstacle to tackle.

It's not Autism but...

Sensory Processing Disorder hasn't been a named diagnosis very long, in the grand scheme of disorders. It was only "discovered" in the 1970s and is still very much an umbrella term for hundreds of "quirks" of which each sensory child can have an endless combination. To many schools systems, SPD is categorized as ADD or ADHD to ensure the kids get the extra help they may and the schools get the extra money they feel entitled to receive. Many states don't recognize SPD as a valid diagnosis. In reality, people with SPD are more on the autism spectrum. Some days, it looks very much like autism. Like today, for instance, when my little boy repeatedly banged his head on the cart while we were shopping because he didn't want to be strapped in (I only buckled him in for a minute while I was checking out because he kept standing up. He was in the seat in the front of the cart so it would be a long way down if he fell). My day is a constant study in safety vs. comfort. He is still a kid though and wants what most kids want.

A wonderful dear friend of mine (who knows at least three families with a sensory child) is always on the lookout for resources and activities for us. She found an amazing (and MUCH needed) opportunity through the Autism Society of America. Once a month, 95 movie theaters across the United States host Sensory Friendly Films. To be honest, I cried when I clicked on the link my friend sent. We have taken both of our boys to the movies many times just because sometimes we want to go as a family but the only way the little one will sit quietly is if we feed him. When we did go as a family, we went around lunch or dinner time so he can eat the whole time. Lately (the last 6 months), my husband or I have just taken the older one (or we let my dad take him) because it's too much work to take a sensory kid the movies. The thought of going to the movies with parents who understand why my child wants to climb over the seats, scoot down the stairs on his bottom, or say "pe-oh, pe-oh" over and over and over and over is a dream come true. He loves movies but just watches them differently than most kids. Now we have the guarantee that, once a month, we can all actually enjoy a movie!

No wind?

When you have a child with special needs, every day is a learning experience. I recently discovered that my son HATES wind in his hair. I'm not quite sure why I just figured this out but as I was thinking about it, it seems entirely possible that this was a new sensation. The air conditioning in my car wasn't cooling properly and since it was at least 100 degrees in my car with the windows up, I did the logical thing and opened all of the windows. The noise that came out of that child's mouth did not sound human! I looked back at him to see a look of terror on his face. He was grabbing his head with both hands while attempting to escape from his car seat. I quickly rolled up all the windows and then, rolled mine back down slowly. Then I rolled the back seat window down slowly (the one on the opposite side of where he was sitting). That's as far as I got before the noise started again. Luckily, we were close to home but my husband fixed the air this weekend. I guess we know who won't be a sky diver when he grows up!

I'm a Mom first...

In an attempt to make this blog a little more personal, I'm going to post more about the mom side of my life. The reason I learned how to save money is because I am a mom. They really do go hand in hand. If I wasn't blessed with kids, I wouldn't have needed to stretch my money as much. If you feel any strong emotions (good or bad) about my sharing this side of my life, please let me know. As always, I want to know what you all think.

No, he doesn't talk. My 16 month old doesn't talk. He says yeah, mama, and uh-oh but sometimes he uses those words as noises (especially uh-oh). I called a local pediatric therapy group (they do speech, physical, and occupational) and asked for an evaluation because I really felt that he should be at least starting to talk by now. The evaluation confirmed what I knew, he doesn't talk. He does communicate well (you know, without a doubt, what he likes and doesn't like) and can follow simple directions. After two 30-min speech therapy sessions, the therapist started asking me detailed questions about things he likes and doesn't like. It was very strange because she knew his actions better than most people who have known him his whole life.

It's a diagnosis! She discovered that my son is a sensory seeker. It is a sub-diagnosis of Sensory Processing Disorder (SPD.) Basically, that means he will seek out anything that involves his senses but freaks out if he is overly or unexpectedly stimulated. He does not cuddle, does not like to be touched softly, and does seemingly odd things to search for a certain feeling that he craves (bites, pats surfaces, carries things under his neck, hits his head, scratches himself.) He also seems to feel almost no pain. He climbs on furniture and throws himself on the ground.
      It was one of those ah-ha moments because in the hospital, at hours old, he wiggled himself free of the swaddling blanket. The nurses yelled at me but I could not keep him swaddled. When we got home, I never swaddled him again because it was a waste of time. I also could not breastfeed him. He would arch his back and freak out every time I held him close. He held his own bottle at 3 months.

He will learn coping skills and become a productive member of society. While some parents may become angry, resentful, or sad when they learn their child has a disorder, I was actually excited. It has made our lives so much easier because it's fixable. He's not just a whiny child who likes to hurt himself and anyone who get too close. His brain actually processes things differently so we just need to learn to present life in way he can process. If he bites in the church nursery, we need to let him chew on something on the way to church, give him crunchy snacks while he is there, and move him to a class with older kids if there are too many people in his class. If all of his senses are on overload by noon, I need to make sure we are home for nap time everyday. If he throws food from his tray when he is done, we need to teach him the sign for all done and watch for him to tell us he is done. This is not a life sentence and he will be able to function day to day without many people even realizing he is different.

Is it genetic? It very possibly is in our family. As I was researching and talking to the speech therapist, we realized both of my boys have SPD, though it manifests in much different ways. The older one issues are vestibular which means he can swing and spin for hours without getting dizzy. He physically can't be still. Even when I tell him to sit or stand still, he wiggles, coughs, taps his toes, or shakes. He runs everywhere and if I tell him to walk, it looks painful. He has horrible pencil control and still scribbles like when he was first learning to color. He also has food issues that were really awful from age 2-3 but he taught himself coping skills and we avoid textures and temperatures that set him off (anything smooth, creamy, overly sweet, or hot.) He also eats incredibly slow because he takes really small bites. At 4 years old, he just looks like an overly hyper kid who doesn't have time to eat. When he is overstimulated (like in a chaotic or crowded room), he moves himself away to a corner or a chair and plays by himself. I say he "puts himself in time out" because if someone messes with him when he is trying to refocus, he will lash out by hitting, pushing, or yelling.
      I have also learned that my cousin's daughter is almost identical to my younger son and my mom is positive my brother had (and may still have) a sensory disorder.

God chose us to parent these children. When I told people I was getting speech therapy for my 16 month old, I got many questions of why and assurances that he would be fine. I knew, however, that he wasn't just being lazy because he was the younger brother. The tantrums were a major issue for me. He can scream for an hour over something he wants and will throw himself head first onto the ground. I understand now why. I feel very blessed because God knew we could raise these boys into great men. He sees something in us that we never knew we had. I'm excited about being the best mom I can be!