The intake coordinator ended up calling me almost a year to the date, and offered to have a team from CITE services come to our house and evaluate Ally to see if there was any services they could provide in our home. How great was that? It was one of the first appointments where we didn’t have to travel clear across town, fight to park, unload the wheelchair and sit in a waiting room to be seen, only to re-load the wheelchair after an hour long session, and then fight the traffic to get home. Instead, they came to us. Of course I was hesitant at first to have complete strangers in our house, but that hesitation flew out the window when Kelly and Chandley walked into our lives and our home. The first visit involved a general question/answer session all about Ally – what was she able to do, or not do, and the one question that no one ever really asked before – what goals did we have for Ally to achieve in the future. It was a great session, and I remember thinking when they left, that they were truly talented individuals with the gift of dedication to helping families work through problems when no one else could even begin to understand children with disabilities. And even though their services were free of charge to me, I would have paid them for their knowledge, their willingness to help, and their caring spirit to come into our home every week to help Ally. You could tell that they loved their job and the people they served. It was after Ally was diagnosed with CP that I felt like people came into our lives for a reason. I didn’t always understand why they were there, but I knew there was a reason. But I knew right away with CITE/RHC.
If there is one word, other than happy, that could describe Ally it would be easy-going. She adapted to her new back brace better than anyone thought. It was me that had all of the trouble. It was just too difficult to see her every day being held in by a plastic padded brace that resembled a corset. But regardless of how I dealt with the situation, Ally did great. And in the long run that is what made it easier for me to deal with the brace.
In June, 2004, Steve, Ally and I welcomed Natalie into the world. And even though there was only a 2% chance that I would have another child with delays, I found myself nervous throughout the entire pregnancy. And at one point I had a complete meltdown when they thought that she may even have Down’s syndrome. But Natalie was born without complications, and seemed to be a ‘typical’ child (and it only took over 5years to take the advice of the doctors to have another child so that Ally could learn by example). I was able to have the entire summer off from work and thought what better time to start working with Ally on a communication system, known as PECS (Picture Exchange Communication System). But I had no idea how to even start the process. Ally’s pre-school teacher mentioned an organization that may be able to help – RHC (Resident Home Corporation). And what I thought would be an easy fix, turned out to be being placed on a year long waiting list. But let me just say, it was well worth the wait.
So when we realized that we didn’t have a choice, I thought, how could you fit someone for a brace when they could barely stand on their own. I was about to find out. As we drove to the appointment, I found myself tearing up once again. Ally sat in the back seat just as happy as always and had no idea what we were about to put her through. Soon we found ourselves in a room with a huge mirror that had a bar in the front of it and a big, low to the ground, padded table across the room up against the wall. It looked like a cross between a physical therapy room and a ballet dancer’s practice room. The mirror was a bonus. Ally loved to look at herself and play with her hair, so I hoped that would help distract her. The brace specialist explained the process to us and began. She wore a special t-shirt and a long rubber tube with a grove cut out on one side was placed under it. She stood in front of the mirror, trying to hold onto to the bar and play with her hair at the same time, while the specialist dipped what looked like an ace wrap into water. The wrap was then wrapped around her waist and back. Once she was covered in the wrap, the specialist pushed her back into a straight position. The tricky part was getting Ally to hold still while the wrap dried. And once dry, a pair of scissors fit right into the grooved rubber tubing and was cut off of her. The finished result was the mold of her back. That in turn would be sent off to be further molded using plastic and the purple butterfly print we picked out. It would take a few weeks before the final brace would be ready, and then Ally would have to be fitted to it. And what I thought was going to be big and bulky, turned out to fit right around her waist like a corset with large velco straps in the back to hold it in place. And even though I still didn’t like the idea of Ally being braced, it wasn’t as bad as I thought.
Fast forward a almost two years. Ally is now 5-1/2. Everything was going well. Ally was doing great at school and she even started walking some instead of rolling or crawling every where she wanted to go. She was pulling herself up to standing and growing at her own speed – even if she was significantly behind, she was making progress. And to us, that is all that mattered. We still had speech therapy once a week as well as physical therapy. We still felt like occupational therapy was needed, but had to pick which therapies we wanted for her since insurance would only cover so many visits each year (a never ending battle). And since she was eating much better, even tolerating table food instead of puree baby food, we chose to put OT on hold. We continued to see Dr. Crawford every 6months for her neurologic scoliosis. And up until now she did not need a back brace. And as with the rest of her body, the curve in her spine was also growing – we are now at the point of needing to stop the spine from compromising her organs. So it was off to The Brace Shop for her first back brace!
I had no idea what to expect, except that I didn’t want to see my baby girl in a brace. The images in my mind were ones of a big, clunky brace that held her neck and back in place to slow the growth of the curve. And all I could think of was how would Ally continue to crawl and learn to walk more with a contraption on her back. She had just learned to walk some on her own, and we didn’t want those skills to be lost, but at the same time, we didn’t want her organs to be compromised.
I have always heard people say that if it seems too good to be true, then it probably is. Of course this was the case with the daycare provider we decided would watch Ally. Things started off well enough at the new daycare provider’s house, but I just wasn’t as comfortable as I was with Sonya. Something seemed out of sorts. I was having a difficult time concentrating at work, and I found myself calling the house to check on her daily (something I rarely did with Sonya, even when Ally first started going to her house). But when the pre-school teacher asked one day who was keeping Ally, my heart sank when I saw the look on his face at my answer. Thoughts raced through my head – did he know this parent? Did he have information about them that I did not know? Was Ally safe? Was she being hurt in some way? Way too many questions and way too much guilt was building up inside me. If anything would have happened to Ally, based on a decision I made, I would never be able to forgive myself. I was a complete nervous wreck. I knew the right thing to do was to pull her out and see if the other family still had an opening, but what do you tell the current daycare provider – ‘I decided that I am pulling Ally out based on a gut feeling I have’. And even though I had no other reason to pull her out, Ally was pulled out the very next day. And as soon as I pulled her out, it was like a huge weight of guilt was immediately lifted off of me. I was able to relax and once again feel at ease that Ally was safe.
Life started getting easier and more of a routine once Ally was in pre-school. Steve and I married, we moved into our new house and once again I was looking for a new daycare provider for Ally (not by choice, but by necessity since Ally was going to need bus transportation and Sonya did not live in the new school district we moved into). And even though Ally was in a routine, I was far from one. Trying to plan a wedding, move, and find someone that you can trust with your non-verbal daughter made my plate quite full all of the time, and nothing seemed to be easy. So Steve and I searched the local township paper to see if we could start the interview process. It was a process that I dreaded, but was hopeful that I could find someone that we could trust. Two interviews were set up, and my parents joined Steve and me for them both. My mom has always had this ‘sixth’ sense when it came to meeting people and she could ‘feel’ trouble right away. So I was very surprised when she liked them both. One had a definite advantage – her son, although high functioning had CP just like Ally. I could hardly believe that we had found someone that knew what we were going through because she too was going through it.
So the school psychologist came out to meet Ally and the rest of the family. The amount of information she needed seemed insane. I felt like I was spinning my wheels over and over answering questions about what Ally could and could not do. Documentation from doctors and therapist had to be sent for review. I had to answer questions about my pregnancy and fill out pages of questions. Which, even though I knew all of the answers, was time consuming and I felt like Ally was being interrogated. Once all of the questions were completed, and the school psychologist reviewed them, a decision was made as to where Ally could be placed. And it wasn’t the answer I was hoping it to be.
Since Ally was not able to do most of the things that a typical pre-schooler could do, and no one knew if she would ever be able to do them, it was suggested by the school psychologist and the evaluation team to place Ally in a special school for children with severe challenges. I remember thinking to myself why? They say that children learn best by example. In fact, one of the very first comments said to me, by a Pediatric Specialist, after Ally’s diagnosis of CP, was to have another child in hopes that the child would be ‘typical’. The reason for that was so that Ally could live with and learn from a typical child. Well if that is true, then why would I place Ally with children that had more challenges then Ally? Ally needed to be with those ‘typical’ children so that she could learn from them, not be placed in a school where the children had feeding tubes, were non-verbal, and required more PT, OT and ST services on a daily basis then Ally. So this is when I learned a crash course in parental rights (www.wrightslaw.com). Every child has the right to attend a traditional school and receive educational services – no matter if they have delays or not. For those children that have delays/challenges, the IEP is developed to set realistic goals for each individual child as determined by the special education teacher, therapists and the parents. And once the IEP is agreed upon and signed by all parties involved, it becomes similar to a law, meaning that if the child does not receive the allotted amount of time specified for each service, or does not receive the service, the parents have the right to report the school.
Needless to say I won that battle. I was not about to place my child somewhere where she wouldn’t be given the opportunity to learn and thrive like every other child attending school. And even though I felt a small victory inside, somehow I knew I would continue to fight for Ally.
Ally stayed ear infection free for 3months – another blessing sent to me and the surgery went as planned. Ally did great with the surgery. Only one small scare when she started bleeding at the mouth in the middle of the night (which can be a common complication). I was very relieved that they wanted us to spend the night in the hospital because I’m sure I would have freaked out if I would have been home alone and saw the blood. Now that that was behind us, we had to move on to the next obstacle – starting pre-school.
Pre-school: I remember watching my nieces and nephew heading off to pre-school for the first time, and it was such a simple process, other than the feelings of feeling older and the tears that all mom’s have their first day. You decide which pre-school you want them to attend, you sign them up for the class, and as long as there isn’t a waiting list, you’re in. Not so easy for the child with a delay. And who would have thought that the process was going to be so involved – not me. Since Ally was my only child, and obviously not ‘typical’ I didn’t really know what to expect. But I can honestly say it was much more than I anticipated. I thought it was going to be just like when my nieces and nephew went – just sign them up. I knew nothing about my parental rights. I had no idea what a MFE (Multi-factored Evaluation: An evaluation where the school psychologist, PT, OT, ST and case manager evaluate the child for special education eligibility for services) was or what it meant. And the term IEP (Individual Education Plan) seemed like a foreign language to me. Luckily, my mom was a principal of a local school district, and she knew exactly what all this meant.
As with the previous winter months, Ally seemed to catch every cold, or virus. 2002 seemed to be no exception. And what made it worse was she always ended up with an ear infection and/or infected throat (not always Strep, but red and irritated enough to cause Ally to refuse to eat). By March, she had already had 6 ear infections. It seemed like a revolving door between her regular pediatrician, and then to the pharmacy for 10 more days of antibiotics. Just when I thought we could have been discharged from a doctor on the long list doctors, I found myself making more and more visits to the ENT. I learned that the reason for so many ear infections was due to the tiny ear canals she had that would not allow fluid to drain but rather gather in a pool and cause the infection to set in. This fact should not have been shocking to me since her optic nerves, and her head were tiny as well. But it did. I guess since it was all connected, it made sense. The ENT was also interested in her sleep patterns because when she checked Ally’s throat at our initial visit, her eyes got very wide with that look of ‘are you kidding me’? She asked – Did she snore? Did she stop breathing in the middle of the night? Those were easy questions to answer – because she did both. In fact if she didn’t snore, I would immediately wake up and go check on her. Her snoring was how I knew she was still breathing. Apparently her tonsils and adenoids were so swollen she was shocked that she was able to breathe at all. So when the ENT suggested tubes to be placed in her ears and surgery to remove her tonsils and adenoids, I was hesitant. How would I know she was alright if I couldn’t hear her snore anymore? I didn’t know that answer, but I was about to find out as surgery was to be planned. But first, Ally had to be on 3 months of antibiotics, and be ear infection free for those 3 months. And if she even had a slight ear infection, the surgery would have to be postponed. The only thing left to do was wait out the 3 months.
Fast forward to January 2002; Ally turned 3 years old a few months prior and was starting to make some progress. She still had weekly therapy, but those were in the evening, which helped out a lot, and she was only being seen by PT on a regular basis. She ran out of visits for speech therapy towards the end of the previous year, so our spot was taken. That absolutely frustrated me because we were making little steps towards Ally understanding cause and effect. And of course, there was no more appealing the insurance companies for more visits since they made a final ruling back in August that she would only be allowed so many more visits. So the only thing I could do was place her name on a waiting list and wait. And waiting we did.