There are days when teaching Pookie to communicate goes much more easily than others. Unfortunately, most days can be a challenge. I am quickly learning that a huge portion of how well he learns is directly dependent on how demanding I am. Let me set the scene for you, with a bit of background to make it seem more clear.
Pookie was first diagnosed with the lower functioning form of autism called (Classic) Autism Disorder back in July, 2010. At that time, he was 27 months old, but only had another 8 months of eligibility in the state’s Early Intervention program. Upon his 3rd birthday, he would be out of the program. When tested, he was cognitively only about 8 months old. He understood what was said to him at a 6-8 months of age level. He was completely non-verbal. A few months before, he was completely in his own world and didn’t respond to even his name. We knew he was not deaf, but he wouldn’t respond to audible stimuli, such as us talking to him. He did not make eye contact. When playing with toys, he would only turn a toy car over so that he could spin it’s wheels. Hinges were another object of great interest. One of his cars had hinged doors and he would sit and spin the wheels or open/close the car doors for hours at a time. If Little Miss played next to him, he was totally oblivious most of the time. Luckily, she is a very sweet girl and would be content to sit near him and play.
We began early intervention with the therapists coming once each week to our home. In many ways it was a sad time. I am both horrified and dismayed at how many times he was expected to respond like a much higher functioning Asperger’s child. Some days, it felt as though Pookie was being set up for failure. Unfortunately, most people think of Aspies when they picture an autistic child. In reality, the Aspies are much higher functioning than a low functioning person with the Classic Autism Disorder like Pookie.
When I spoke about the reality of Pookie’s level of autism, I was often hurt by the callous and sometimes mean-spirited words that other parents of autistic children or the therapists would feel free to say to me. Some thought I was giving up on Pookie ever being “cured” or becoming someone who would be able to live out a “normal” life like any typical child. Others felt that I had limited our son. The most vicious said that because I didn’t pursue getting him on a mile long list of supplements and diet change according to the DAN approach, I was acting as though I wanted my son to remain autistic. I have learned through this that the most difficult people to have around are parents of children on the autism spectrum or idealistic therapists who are ill-informed as to the varying level of autism. I have learned that there is NOTHING out there for parents of the children with Classic Autism. Because of the ability that most Aspies have to integrate into classrooms and function with some assistance, the greatest emphasis in therapy approaches and research is done for them. They are among the larger percentage of the cases of autism spectrum being counted today. The ones with Classic Autism Disorder are in the minority in the spectrum. In some ways, I say “Thank God” for that! There are some days when I get angry at the way the ones dealing with classic autism are being ignored where therapies and research is concerned. This Momma’s only thought is for my own son as I wonder, “What about Pookie? Is there nothing out there to help him?”
It was a blessing that when we were waiting for the evaluation date for Pookie to be diagnosed, I found Jenny McCarthy’s book, “Louder Than Words” at our local library. I read the book and while I may not agree that everything she did would work in our situation, I admired her drive in doing everything she could for her son. In some ways, it has inspired me to do as much research as I can in to the various therapies available.
We live 80 miles from the nearest cities that have the variety of therapists Ms McCarthy spoke of whom are trained in working with autistic children. Yes, there are some closer who are great with Aspies, but as I mentioned before, there is nothing for the more severe cases. Because of this, I felt driven to learn as much as I could. I found that it was a good decision on my part to do this. You see, when the early intervention folks come and are expecting your child to perform like a higher functioning child on the spectrum, there is going to be a wall hit at some point. The child could hit the wall when the therapy is demanding from them things that they are in no means ready for. For example, one therapist was insistent that Pookie ride a tricycle, even though he was no where near being ready for that yet. On the other hand, the therapist may hit the wall when all of their preconceived ideas of how to treat the child fails and they have to reevaluate what they are demanding the child to do. I have seen both ends of it. Pookie hit a wall and began stimming far more than usual & avoided interaction or eye contact whenever this one therapist was around. You could literally watch as his total demeanor changed into a regressive state when he saw her enter the house. There was one therapist who insisted that he had to say a certain word of her choosing, even though she knew that he was incapable of it. Many therapy sessions were wasted over that issue as weeks went by and he was no closer to even trying to say the word she was demanding to be said. Eventually, we stopped going to her for his therapy. We were disillusioned by the total disregard that the therapists had for where Pookie was at that time. Instead of looking at what he could do and building upon it, they insisted on their own agendas that did no good for him during the entire time he was in early intervention.
I realized that if Pookie was going to have a chance, I would need to take charge of his therapies. No one knows what he can do better than I do. I am with him daily. I see his moods and can “read” his behavior well enough to know what will and what won’t work. I began using the Floortime approach and had great results with it. He began making eye contact and responding to his name. If I held out my hand and asked him to come with me, he would walk up to me and take hold of my hand. I learned to never grab his hand but to allow him to take mine. He still to this day does not his hand to be held. He much prefers to be holding yours. For safety reasons, I have a monkey backpack that he can wear. It has a long “tail” that I can hold onto so that Pookie can walk next to me, but not wander away. I also have an umbrella stroller that we use quite often. This allows him to feel safe and comforted when we are in places that are crowded or has too much stimuli for him to deal with while walking. One such place is when we go to the library. With school being on break for the summer, the library can get quite busy in the children’s area. At times like that, Pookie needs the stroller just to be able to handle what is going on around him.
Once we had a good handle on getting Pookie to respond to the interactive play and verbal commands, I began incorporating the TEACCH approach. This is still in it’s early days with him. Some days, he will do great while others he will be melting down and not wanting to do his task boxes. I always have a back-up plan in place for those harder days.
I have been doing ASL sign language with him daily. As often as possible, I will sign as I speak to him. In teaching a new sign to him, I gently take his hands and assist him in making the sign, saying verbally the word as we make the sign. After many times of using the hand-over-hand approach, I encourage him to make the sign himself. I do this at first by gradually holding his hands lighter and lighter until he becomes used to signing the word without my touching his hands at all. Little Miss is learning sign language simply by watching and practicing the signs herself as she repeats the words the signs represent.
As we approach the 2 year mark of when Pookie was first diagnosed, I see so much progress. He is laughing and quite ornery some days. He indicates when he wants something to eat or drink. He is interactive with others daily. He is beginning to assist me in dressing him. The best progress is in that he will say words from time to time. In the past couple of weeks, he has said a couple of words with true intent, not just mimicking what he has heard others say.
As I prepare for autumn, when I begin homeschooling him at a Pre-K
level, I am filled with hope for Pookie’s future. I have already learned what his learning style is and have been adapting curriculum to meet his needs. There are days when I wish I had another homeschooling Mom who understands classic autism that I could talk to. There are many days when I feel as though my husband and I are on our own in this. Our church family is supportive, but living so far away from the city, it is not feasible to connect up with anyone. Most of the women work outside the home and I don’t like to interfere with their family time. The nearest support group for families with kids on the spectrum disbanded due to lack of members coming on a regular basis. That group wasn’t much help to me anyways as they were all Aspie or PDD-NOS families. The meetings discussed what worked for these higher-functioning children, but there was nothing geared towards the low-functioning. So, I simply lean on my husband and my prayers to the Lord.
Pookie is doing far better than he was 2 years ago. There is much yet to accomplish, but the change in him already in these 2 yrs has been so rich in blessings. Only the Lord knows how far Pookie will progress.
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