Tuesday, April 08, 2008

Maya's Therapy Begins

These three pictures were taken in the spring of 2005 -just before Maya's first hearing test and her developmental delay evaluation. Mandy, Maya and I had gone to my cousin's home in Virginia -just outside D.C. -for a little weekend get-away and chance to visit with my cousin, Bea, and her Mom, "Grandma Ruthie" as she is referred to within our family. Bea and Mandy took Maya for a walk to a park nearby Bea's house and the first picture is of Maya with Cousin Bea.

Each time we took Maya in for a check-up and the shot routine, when I would mention to the doctor things that were worrying me – the eye contact, toe walking, her non-recognition of us, not pointing to things, not seeming interested or able to follow along in baby games like patty-cake and general things like that, I often felt the doctor thought I was just an over-reactive old fuddy-duddy grandparent. She would kind of blow my concerns off –or so it seemed to me.

Until finally when Maya was about 18-19 months old and she saw a bit more in the office how Maya responded –or rather, didn’t respond –and she ordered a hearing test. At the same time though, she also referred Maya over to the Cen-Clear Early Intervention group for an evaluation.

Maya -around the time of the evaluation process.

The group arrived at the house in mid-May of 2005 –I can’t recall now if there were four or five women, all trained specialists in early childhood behaviors but the lady who is the coordinator for this program –Jenny –brought her laptop computer with her and she was immediately a favorite person in the group as far as Maya was concerned. She was fascinated with that computer and we had to watch her like a hawk because she was trying, every time she could, to get her little fingers onto the keyboard of that laptop!

These therapists used various means to test Maya and told us at the end of their testing that she definitely had some developmental delays. They were to process all the data from the observations they made that day of her skill levels and would be back in a week or two to give us the results in a printed form.

I don’t remember now what all the percentages were that showed how much of a delay Maya had at that time but she had many –in areas we didn’t even realize either –fine motor skills, gross motor skills, different areas of speech and behavior. When they had the evaluation all processed and returned, the initial verdict was that she was developmentally delayed and that diagnosis could change again too once we got the hearing test done.

The recommendation was that she should begin receiving therapy for behavior/play and speech immediately, even before the hearing test. However, the hearing test results were such that there were no hearing issues found, so no changes were made then to the developmental delay evaluation. I asked the therapists at that time if they thought Maya might be autistic and the response was that none of them were qualified to do an evaluation for autism – you have to have a certified psychologist or psychiatrist perform that in order to get a diagnosis of autism.

I remember too that when I asked that question about the possibility of Maya being autistic that Mandy stiffened immediately. She refused at that time –and for many months after too – to acknowledge the possibility her baby might be autistic. She also did not want me to even mention the word around her.

The therapy began in June of 2005 and the first two therapists we had assigned to Maya only worked with her for about a month before the one girl quit and the other I believe was replaced and we were assigned two new therapists.

That was a very good move with respect to Maya, Mandy and me too as the new therapists Kerri and Mandy, both have become since then like part of our family. They both bonded very quickly with Maya and she, to them as well. Once a week, for an hour per session, they would come to the house and work with Maya.

Because keeping Maya’s attention span on target was very difficult, they would work with her while she was seated in the high chair. Although Mandy, the speech therapist does sign language, she didn’t really work that much with Maya in terms of trying to teach her a few things with sign language but rather concentrated on trying to get her to recognize objects and the sounds that went with each item. Both therapist came lugging some types of puzzles, books, toys to show Maya and work with her using those items.

Maya -Aug 2005 at cousin Alex's 8th birthday party

That fall of 2005, the agency that works with us also signed Maya up for a toy program. Brenda, the lady who was the coordinator of that program was fantastic. Every week, she would come on Tuesday morning and bring a new toy or book for Maya, which was then left and became Maya’s own property. Brenda would return on Thursday afternoon to sit with Maya and play with her with the most recent toy or book to see how well Maya responded to each item along with taking information from Mandy or me as to whether Maya played with the toy, how much, did she really like it or just barely pay attention to each new item.

Brenda worked in the capacity of the “Toy Lady” with Maya from September of 2005 until May of 2006 –the program didn’t operate over the summer months. But in the fall of 2006, she took another position and we had another young lady whose name I can’t recall now who was the new “Toy Lady.”

The toys they brought along with the toys we purchased for Maya and also which were showered on her too over those two years quickly mounted up to where it looked like we might need to build on a big room just to store these toys and books in there. Some of them, Maya only gave a slight amount of interest to but others, she latched onto and played with over and over again.

One particular toy that Maya really loved was a working (but toy) tape recorder/player that had a microphone with it. She quickly wore the batteries out in that one. We replaced them and it seemed within a day or two, they were worn out again. Plus, because initially she had some issues with the motor skills, she would get the tapes stuck in the recorder too which would generally results in a hissy fit, meltdown then, as you couldn’t get there fast enough to suit Maya and get the tape removed and re-inserted properly. But she dearly loved that item and played with it over and over again.

Kerri, the behavior/play therapist noticed after about two-three months that Maya was quite obsessive about how she played with certain toys –particularly blocks. Kerri would put a group of blocks out on the high chair tray and Maya immediately would begin to line them up. However, when she would line them up, she would do it so that whatever pattern was showing on the first block she selected – a letter or a picture –the rest of the blocks all had to have the same thing facing up as she aligned them on her tray. If she was setting them up with a number showing and she spied one that was the letter or a picture facing up, she would get very upset until she got the blocks to each have the same type of design facing her.

Kerri also began introducing Maya to wooden puzzles with a tiny knob-like handle on each piece. She would show her the puzzle pieces, identify what was on the picture there to Maya and then hover the piece over the spot where it should go but Kerri wouldn’t put the piece in Maya’s hand and guide her to the open spot. Rather she would lay the pieces down and allow Maya to pick them up and remember where Kerri had initially shown her the piece fit. Within a month of being shown how to do puzzles of this type, Maya quickly came to love that type of play and could generally master each new puzzle Kerri brought in short order.

My Dad’s sister and her daughter were still residing at the family homestead at that time and my cousin, who is severely mentally and physically challenged, had all kinds of toys there from stuffed animals and dolls to some puzzles as well. One puzzle that my Aunt brought out one day when Mandy and Maya and I were there visiting was a fairly large wooden circle and each of the puzzle pieces were of various sized circles. Maya latched onto that puzzle and played and played with it- doing quite well at getting the pieces in the proper slots too. And, from that day on, any time we stopped to visit at my aunt’s house, as soon as Maya got into the kitchen, she immediately took off, going to the room where she remembered my aunt kept that puzzle and she would bring it into the living room and sit on the floor playing with it again and again.

She also had been given one of those little stacker toys too by my son and his former girlfriend for Christmas when she was a year old. Initially, she didn’t pay too much attention to that toy but after she began the therapy, she soon discovered that and would play with it, trying to stack the rings for a while but there was something else with that toy that garnered her interest even more than stacking the rings correctly. At the top of the ring stacker, there was a star and as the child would put a ring on the little pole, the ring passed over a little switch that would make the star light up and play music. Maya was more fascinated with making the star light up and the music play and she searched and searched until she found that switch just under the star and more often than not, she would just play with the stacker unit, pressing that button over and over to watch the star light up and the music play.


Leigh Russell said...

Not drivel at all. What a beautiful little girl.

Dianne said...

It never ceases to amaze me how you remember this all and how involved and supportive you all are as one wonderful family.

Anonymous said...

Reading your memories of Maya's development is almost like being there and seeing it happen. I can't wait for the next installment. I wonder if you're thinking about putting these posts together into a book? It would be a wonderful resource for those looking for support or simply wanting to gain an understanding of autism.

Smalltown RN said...

what an amazing story and journey you have all been through in such a short period of time.....often doctors to poo poo parents thinking we are over reacting...but you know...you know your child...you being grandma have rised children you know what natural progression is...and you recognized things weren't just right....good for you for perservering.....I had to do the same thing for my daughter with dyslexia.....I knew right from the get go because I had her two older sisters to compare to....I became a thorn I know...but it was because I wanted what I thougt she deserverd....

My eldest niece has a son who has Opitz....very rare...like under 100 in all of Canada....it is a midline disear that effects everything....she has had to struggle all along trying to get what she thought her son needed....again perserverence....

Maya is so fortunate to have you and people who love and care about her to make sure she gets what she needs.....

I have an award for you!

Mimi Lenox said...

You've been royally tagged by Mimi Queen of Memes. Have fun!
Message In a Bottle

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