I decided to start a blog to share my family's journey with Asperger's and Apraxia. This journey so far has been a difficult, but rewarding one. But a lonely one, I must admit. With little family support, I have dealt with numerous teacher meetings, social worker meetings, therapist meetings, counselor meetings. You name the professional...I have sat in their waiting room with one of my boys hoping to get some kind of answer.
My youngest son has the most obvious issues. You can pick up very quickly that my 4 year old has a speech delay. But I was told when he was almost 3 that it was more than just a speech delay. He actually has a neurological disorder called Apraxia. And if your scratching your head and wondering what that is....your not alone. I did the same. I actually didn't even look it up for a long time. I just thought it was a speech therapist term and I never really knew that it was a serious issue. But after we moved and another speech therapist also agreed that she thought it was Apraxia as well....I looked it up. My heart sank into my stomach. The things I read scared me to death. Some kids with severe apraxia do not ever learn to speak clearly. Some rely on communication devices and/or sign language. We still to this day do not have a formal/medical diagnosis because of one awesome Neurologist who spent 5 minutes with my child and told me he was fine. GREAT, thanks dude. I wrote off his advice, and decided to trust the speech therapists who have worked countless hours with my son. So his disability is one that our family and friends are very aware of, and are supportive of our efforts in helping him communicate. We all learned basic sign language for when he was completely non verbal. We praised him for every new sign that he mastered and praised him even more for every new sound that he made. He is now 4, and is now starting to talk....a LOT. His words are not perfect. He is still very far behind in his speech. When he tries to tell you something he has to work extra hard to think of how to put his sentence together. But he can. He can now tell me what he wants for supper. And just typing that makes my eyes tear up because a year ago I wondered if that would even happen for our family. If you would like to know more about Apraxia go Here.
Now that you know a little about my youngest son, I will tell you about my oldest. I have always called him my challenging child. He has been challenging me since the day I brought him home. From a failed attempt at nursing to the defiance in potty training...this child has challenged me on everything. I always find myself telling people how much I DO LOVE him because I am afraid that when I talk about his behaviors it makes them think I don't. But I do, and that is why I push him and make him do things he does not want to do. I have to push him otherwise he wouldn't improve. We noticed from the time he was very young that he was incredibly smart. I know...first time parents...we thought everything the child done was amazing. Oooh look! Wasn't the most amazing spit bubble you've ever seen?!?! <-----yep that was me. I took pictures of everything! I had countless albums of pictures documenting every moment of his first year. But back to noticing how smart he was. When he was 1 he could identify colors....all except orange. He had an issue with orange and refused to acknowledge that it existed. That should have been a clue to his stubbornness but I missed it. He wasn't able to say them all clearly but if you put a different colored objects on his high chair and ask him to pick up the red one he could. We also started to notice other odd things. Every toy he picked out or even chose to play with when he was small was green. So we figured that he must like the color. That was when green started to over take our lives. I remember the excitement of knowing his favorite color, he was developing his own personality....it was sweet and I loved it. Now, he is almost 6 and I have to admit....I am so sick of green. But that is another post ;) Back to my bright baby. Before he was 2, he could identify all the letters of the alphabet and before he was 2 1/2 he knew all the letter sounds. I have short videos of him doing them, I wanted proof that my kid was super smart! I remember the awe struck look on my friend's and relative's faces when they watched them. The consensus was clear...this kid was a genius in the making. I would just swell up with pride...I made such a smart baby!
As he grew more little things started to stick out to me. Especially when we went out in social gatherings. He seemed to struggle when he tried to interact with other kids his own age. He had 2 cousins that were born the same year as him and he never really could play with them. I just chalked it up to the fact that we didn't get them together enough. But he needed constant supervision when in a large group. He would become very hyper in a crowd. Birthday parties became something I dreaded even going to. I remember having to put one of those backpack leash things on him when I was pregnant with his younger brother at a party. (yep, I'm one of those kid leashing parents...) I couldn't turn my head for a second or he would be gone. The kid was FAST. As he got older the differences between him and peers became more obvious. But I worried that I was just being one of 'those' moms. You know the helicopter moms? Yeah, well I am pretty sure that is what I am now. But there is a reason for that.
Anyways, we started him in preschool when he was 3. To say that it was a failure would be the understatement of the universe. We were asked to leave the Montessori School in our local town. He was described as 'a tiny bulldozer....plowing down anyone and anything in his path.' As you can imagine I bawled like a baby when I had to sit down with his teacher and the director to hear my child being described like a monster. We eventually found a new preschool for him. It was a little better of a fit, but I still received phone calls, letters and concerning comments. Then came the horrible E word. They wanted him EVALUATED. He had been seen for speech services but they brought in a Psychologist. And after talking with my little boy the psychologist made notes that said 'concerning behaviors consistent with Asperger's' There was a list below of behaviors...most of them I agreed with but one that stuck in my memory was 'lack of empathy'. And all I could think was how did I raise a child who lacks EMPATHY?! I was so upset and refused to have any further testing done. He was ONLY 3....that is what I kept telling myself. That along with He is JUST a boy...he'll outgrow these tantrums and behaviors. I also started limiting his toys...thinking he was just spoiled. Which, was the general thought among family and friends.
I could feel the eyes of everyone on my son when we went out and he had a meltdown...then the eyes would move to me. Because children are a product of how you parent...right? That's how I thought too. I felt like a complete failure. I wanted to know what I had done wrong with him. He was having meltdowns over every little thing. He became so upset once that he ripped his sheets off his bed and tore all his clothes out of his closet. He was barely 3 when he managed to do that. And it scared me to death. I didn't know how to handle him or control his temper. I tried to discipline it out of him. I tried everything. Nothing seemed to make a difference. He still became very upset if he wasn't able to wear green one day or if his pop tart broke before he was finished eating it. He also became very upset if something unexpected happened. He liked routine. And as he has gotten older we have realized that keeping a good schedule or at least informing him of any unexpected changes is a good idea. But the meltdowns kept coming and nothing me or my husband done could help him. I remember the moment when I thought....'he can't control it.' I saw in my precious little boy's eyes that he didn't know how. It is a heartbreaking thing to watch your child go through something that they don't know how to stop. I quickly learned how to gauge how upset he was getting and I would try to calm him down before he got to the point of no return. I became quite good at that but it was a short lived victory. Because as he got older his meltdowns increased and became worse. He was still having a hard time in preschool with other kids and the director told me that just couldn't relate to the other kids and that he became very frustrated wit them. 3 was a very difficult year for us.
But I realize, I must wrap this up eventually...I tend to write novels when talking about my kids. So the title of this post is 'The WOW Moment' because I had one of those WOW moments. I am one of those people who watch tons of tv shows via netflix. I even become addicted to the not so great ones. I watched ALL of Ally McBeal in an embarrassingly short amount of time. I kept hearing people talk about 'Parenthood' the tv show. I thought....geeze I live that every day....how great can the show be? But after a few times of it popping up on my facebook feed I decided to watch the first episode. After watching the first few...I was crying. I saw my little boy in Max so much. I related to the struggles they dealt with. And at that moment...I thought maybe that psychologist was right....maybe he does have Asperger's. At this point, Eli was already diagnosed with Sensory Processing Disorder, and was in Occupational Therapy. He was still struggling so his pediatrician gave me the numbers of several specialists and they all seemed to agree on 2 things. He was crazy smart and way ahead of kids his own age and that he showed a lot of signs of being somewhere on the Autistic Spectrum. They all seemed to be saying 'Asperger's' and although they kept telling me that it was not a devastating diagnosis, I still felt defeated. We were eventually able to get him in with a specialist and he was diagnosed officially with Asperger's/ADHD this year. He is almost 6 now and our days are far from perfect.
I have learned to rejoice in the good moments and let the bad ones go. We try and celebrate every step forward even if sometimes it feels like we also take 3 steps backwards. We celebrate every new word that my youngest masters and we celebrate every social gathering that Eli is able to survive. Our good days are probably different than yours. But this is our Journey....our life.
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