Posted by Dawn-Ann on September 2, 2012
This is a bit of a departure but I was deeply moved by my sister’s story about her struggle for her daughter. Being a grandmother of a wee boy who is also on the spectrum, this subject is near and dear to my heart.
This is long, but may help others who are struggling, particularly in Alberta.
Our family’s journey began in 1999 when our spectrum baby was born.
She was born with jaundice, which was new for us as our first babe did not have that. She had to spend a week under lights, but overall everything seemed normal.
It wasn’t until I started babysitting that I noticed baby B (as I’ll call her – she was about 6 mos old at the time) wasn’t progressing and something didn’t seem quite right. I never wanted to compare her to her older sister, as she was walking and talking to adults at an early age (9 months walking and talking). Things came very easy for her, we could tell. But things for baby B didn’t come that easily.
Anyway, there are things that I can clearly remember such as an instance in which another mom had a baby born around the same time as B. The mom was commenting her babe was already saying “mama.” Well, my baby wasn’t and it wasn’t for lack of trying (these babes were around 7-8 months old). My babe just wasn’t talking at all, let alone really even looking at anyone.
I was frustrated, scared and wasn’t sure where to turn. I talked to my hubby about it but he kept telling me that he didn’t see a problem (keep in mind he’d have to go to work so wasn’t with the kids 24/7 like I was). I’d try to talk to others but I never got a definitive answer. Yet everything inside me was screaming *****SOMETHINGS WRONG!!!**** I even remember my dad commenting one day, “She seems so happy, maybe she’s in her own happy world. Leave her alone.” I never felt more alone yet more determined than at that moment.
It was then that I vowed come hell or high water I’ll do everything and anything for my kids – not that I didn’t before but when you are seriously put up against the wall, you just know what you will do. Never ever put a mom there.
And so our journey began. I knew that we needed to start with her speech so I phoned our local speech pathologist and set up a time (B was now 1 year old). It became apparent from the first visit that this was the start of many visits to come. We ended up seeing the speech path twice a week for 6 months and we had to do intense training at home. We had charts that had pictures and velcro on the back (pictures of food, juice, toys, cat, dog – that kind of thing) and when B would want something we had to make her look at us. Her eyes would never look at you and even still to this day if you watch her closely when she talks to you she has a hard time keeping eye contact. Anyway, she would have to take a picture and move it from the bottom line to the top line and we would try and practice saying that word.
Our speech path was a godsend for us. She became B’s advocate as I started learning how our system works for special needs kids. She advised me that we needed to get her into the developmental clinic at the childrens hospital. I first needed a pediatrician to help get me there and so I saw our local doctor, who referred us to our first pediatrician. I took our girl to her first appointment with her and the pediatrician agreed she needed the developmental clinic and that the paperwork would be started, but because of the high demand it could take up to 6 months to get in.
The intense training continued and the wait was overwhelming. Six months was forever away, and my speech path kept asking, “When are we going in?” So after approximately 6 months I phoned the hospital to see when they would see B. Well, lo and behold, there was no referral for her. I calmly explained who I saw and what the deal was but I was told B was nowhere in the system.
So I phoned the pediatrician and she told me that she decided afterwards that B wasn’t too bad and without my knowledge never sent a referral in.
I cannot tell you how gut/heart wrenching, mixed with fear, I felt in that moment and from that point on no one was gonna mess with this mama bear!! I also realized in this moment that no one will love my child or go to bat for my child like I would, so if you weren’t on our team for her betterment you were dropped rather quickly.
I phoned the hospital back and explained what the pediatrician told me. I also gave my speech path’s phone number and told them to contact her or start giving me numbers so she could contact them. I also phoned to the medical association and filed a formal complaint against the doctor. My speech path also filed as the doctor had sent a letter to her originally saying she agreed with her diagnosis; and so she was caught and was reprimanded.
By this time I should note that an occupational therapist/physio therapist (OT/PT) was brought onto B’s team, as B couldn’t run and her fine motor skills were horrible.
The hospital sped up B’s paperwork and saw her within a month of my phone call to them. I was armed with my speech path and our OT/PT that had been working with B.
We took B into a room with 6 adults. They were a pediatrician, speech path, one OT, one PT, neurologist and geneticist. I and my team are then taken out of the room to an adjoining room with a two-way mirror so we could watch without B seeing us. She sat playing with a doll and babbling to it (I forgot to mention she was at this point an 18 month old with the vocab of a 6-9 month old). A moment that still sticks so clearly in my head and still breaks my heart a little is B happily talking away to the doll and the speech path and the pediatrician looking at each other and they both said unanimously “What?? Can you understand her??” I felt hopeless and wanted to whisk her out of there but knew she was in the best place for her and I was going to build her the best team.
And so the ball started rolling. First on the agenda was the geneticist who we saw two weeks after this. B was tested for 15 different syndromes, one of which was Williams Syndrome. During the wait for these results to come in I researched all of the syndromes and in my head eliminated them one by one; but I kept going back to Williams syndrome. She had the puffy eyes, her eyes were an icy blue in color, her fingers and toes were bulbous at the tips… There were so many things she had that I mentally prepared myself for her having that. I contacted the Canadian Association for Williams Syndrome and talked with a super lady who sent me soo much info on this virtually unknown syndrome.
Meanwhile B was still seeing speech twice a week and our OT/PT once a week. We also had more trips to the hospital as her team in Calgary needs to keep doing followups and ramping up her therapies. B had to have an MRI done to make sure she didn’t have brain damage or any type of blockages in her brain.
Then the call came and all her genetic tests came back negative! I was absolutely floored as I was 100% sure and prepared for an answer. When it didn’t come I felt so lost and alone again.
B’s speech had slowly improved but you soon learn that when they start to learn something they *lose* something. For instance, B would start learning words and talking, but for awhile she forgot how to walk. It does come back once they master something but then they forget how to do something else for awhile.
In the meantime, I just kept researching. Try and research autism and you get a bazillion sites and then to try and sift through it all is overwhelming. I belonged to an online support group and also started going to one in my area, but it was the online support group that told me about the inverted Williams Syndrome. With any syndrome there’s a glitch in that person’s chromosome. In Williams Syndrome its in their #7 chromosome which can be seen through special microscopes; with inverted Williams Syndrome you cannot see the glitch on the outside – you see it from the inside. I immediately called our geneticist and requested this test to be done, and again with our luck, she had never heard of it. So I sent her the link and decided I have really had enough and I contacted the researcher out of Toronto myself.
I sent him an e-mail along with a copy of B’s geneticists report, which also stated she falls into many of this syndrome’s categories. Within two days he sent me forms that my husband and I filled out. Then we went to the hospital and had blood taken from C, S, B and myself. It was a constant sending of e-mails back and forth to his aide and waiting. We were told right from the start that this was research so it could take a long time but that if something happened down the road and something came up we would always be notified.
We also started funding on getting B an aide who would come to our house three times a week to help us out (after all, kids don’t really wanna hear their parents all the time!). She also had another aide at playgroups as B would be very agitated with me in these settings but was ok with her aide).
At age 3 we decided we needed to get her around peers her age to try and bring her up to age equivalent. We enrolled her for the next year’s kindergarten, knowing she would have to repeat it the following year. When she started school, B’s team at this point was a speech pathologist, pediatrician, OT/PT, two aides – our own little entourage!
When B started school she would go for half days with her aide and the pressure was really turned on her. She had to look in the eyes when talking, she couldn’t be more demanding then the other kids (she would literally push them out of the way and be aggressive with them), she’d have to raise her hand if she had questions – that kind of thing. She also had goals she had to meet, such as holding a pencil a certain way 4 times out of 10.
We received an e-mail one day saying B’s results from Toronto were in but they wouldn’t release them to me. So I had them send it to our local doctor and have the results read. It was negative for the inverted W.S. However it was noted it was still in research and the prognosis could change if they found something more.
For some reason I just had a feeling that would happen (again our luck).
During this whole process I felt it my mission to be the best advocate for my child in the best way possible. I started writing letters to our local MLA about much needed changes in the way funding is for special needs kids. After all, parents are going through the most difficult days of their lives; why should we also have to fight to get help for our babies?
I started writing letters to our minister of children and during that time. I also wrote one to the minister of health to complain again about how poor the first pediatrician was and how I had hoped more would be looked into the matter because maybe she did that to others and those moms didn’t know how or were too scared to speak up.
I received letters back from these ministers as is their protocol but there was something different about Iris E. Her letter was extremely heartfelt and she asked for a picture of B, so I sent her one. She also asked if I would please keep her updated as to what was happening with B, and I did.
Everything seemed to be going relatively well, except for the fact that I was going to be losing our speech path due to a pending move. I was scared again as it can be very difficult to find special needs aides that really do care for your child and their progress. So for a few months we did our stuff at home with B’s aides. It was a long time before we were to see our team in Calgary again so we just did what we were told to do.
Then came the first year of kindergarten and it was surreal to have both my babies in school. This was a hard time and most afternoons I would cry.
We did gain a new speech path but I knew from the moment I met him this would be trouble. First, he had a very strong English accent, which is hard for any child in speech therapy. Second, he had a holier-than-thou attitude, which I knocked off a few times but I’ll get into that later. Third you could tell he really didn’t care for kids.
At this point, I had written a letter to our then premier, Ralph K., explaining the difficulties in raising a child with special needs and how it shouldn’t be this hard etc. How there should be more done for parents looking for help; how more awareness needs to be made for everyone. B wasn’t the only one in the world having these type of problems, yet we all felt so lonely. The premier sent replies, also wanting me to keep him updated on her progress (I wondered if Iris had said something to him and I later learned she had).
In the contract between the school and our mental health board, B was to receive one-on-one speech therapy each day in school for one hour. The speech path was paid for by the government. I had B’s teacher pull me aside one day saying the speech path was not fulfilling his end of the bargain. Because I’ve been doing this for a few years now, I had a copy of the contract. I stormed into his office, bypassing everyone sitting in the waiting room and slammed his door so hard things fell off his wall. I threw the contract at him and told him to explain himself immediately. He sputtered that he didn’t realize she was to get one-on-one etc. He just sat there babbling away. I told him he had 30 minutes to get to the school and get her one-on-one done, otherwise, what he just witnessed was the start of a very long hell for him to live and I meant every single work I said.
I then went back to the school to tell the teacher that if he didn’t show up to let me know, but before I could leave he was already there. I reported the incident to Iris, Ralph, the school board as well as the speech path’s superior. They wanted to be updated on her so I was updating them! It wasn’t long – maybe 2 weeks – before he was transferred away, and not long after that he lost his job.
I was part of a support group in our area and I asked Iris if she would ever be able to attend one of our meetings. We had on our support team a psychologist whose son had fragile X, we had teachers, stay at home moms and dads… We had a very diverse group made up of about 17 people. I went to a meeting one night and this gorgeous lady came in just before it started and a man was behind her with a beautiful tray of food and goodies. We never had food or goodies! This lady asked for me and I walked over and introduced myself. Her name was Ruth C. Iris had sent her and Ralph wanted our meeting to have some food, so he sent that.
That was a huge pivotal moment, as I felt that finally someone was listening. We had a great meeting and Ruth wrote down a million things. I absolutely love this woman. She is so down to earth, yet at first she seemed like someone I couldn’t ever really sit with. She just seemed so out of my league, yet she totally wasn’t. She took her notes and gave me her card telling me to call anytime. She also told me that Iris has B’s picture in her office and talks of her often looking forward to the good updates =)
Approximately six months after this, I received a formal letter from the government asking me to go to a symposium in Red Deer. The topic, of course, was special needs kids and advocacy. I took the psychologist from our support group and one other member. We walked into a regular board room with tables everywhere and took our seats as more people from all walks of life came in. My back was to the door but I laughed when the psychologist’s eyes lit up – in fact everyone lit up and looked at the door. I turned around and saw this gorgeous lady, eyes scanning the room then lighting up when she saw me. I jumped up and gave Ruth the biggest hug I could. I think most people were envious, as they knew she was someone important and here she was hugging a me – a regular mom in jeans!
It was a great meeting. We talked about the inconsistencies between government agencies and how parents are past frustrated with everything. How they needed to change the medical regions (it’s really hard living in rural Alberta), etc. I left feeling like I actually made a difference to not only our B but many other B’s in Alberta. That was a good day. =)
Within a year of our meeting, many but not all of our suggestions were implemented, along with someone else’s idea about tearing down the health regions and making it be more under one umbrella instead of many.
The following school year B had turned 4, at which time some major funding for her ended. She lost her aide for home, we had no speech path in our town, she was at high risk of losing her aide for school, which we all knew (her pediatrician, OT/PT, me and her Calgary team) could not happen.
In Alberta, the government gives the schools so much money per year for special needs funding. It doesn’t matter if 100 more special needs kids move into that town, the funding won’t be there until the following year, if then. It can be hard to get mad at school boards sometimes, as when they talk about funding or lack thereof it’s because the government only gives an aide (at this time 8 years ago) $20,000 to go to the aide’s wages. The rest must come out of the funding they give the schools. The funding they give the schools is no where near enough to be able to give the kids the adequate care they need or deserve. This was an eye opener for us. Nonetheless, I wasn’t about to stop my fight for my baby.
I had heard from B’s teacher the year before that B probably wouldn’t get funding and this was coming down from the superintendent. They deem her not being special needs enough and she has no real diagnosis (it’s extremely hard to get funding with no diagnosis). Not to be deterred, I got out my pen and paper and wrote to Ralph, who personally wrote me back. Not even a week later, the superintendent called to tell me someone from the government had called their office and wanted to know why B wasn’t receiving an aide next year. Then, miraculously, our school board had $$ to get her an aide!
I don’t care if people get mad at me, I did what I set out to do – be the best advocate for my child, who was and is very much coming out of her shell. B is now almost 13 and she still has difficulties. For instance, you cannot tell her to go put the milk away then feed the dog. She is only able to process one thing at a time. She is absolutely brilliant on math, but struggles very very hard in reading. She has difficulty in processing things at times and will ask many questions. It can seem like she’s gullible, as she believes everything people tell her. She has a true heart of gold and would do anything to help anyone out.
She has not had an aide since grade 4, we had to make an extremely difficult decision to put her on Adderall for ADD (it helps to keep her focused and I have been told by her teacher it’s night and day when she doesn’t take it). It was not a decision made lightly, and in fact it took a year of research and debate with us. She only takes her meds for school; she does not take them on weekends or summer holidays.
However, she still has goals she must meet every year in school. Every report card period we are to meet with her teacher to make sure her goals are being met. Still in those goals are eye contact when speaking to someone and holding scissors and pencils a special way (if she had her way she’d do it her way). Her biggest goal for this year is comprehension. She’s to read and try to comprehend what it was she just read. This is always a battle of wills as she HATES reading with a passion.
I do not regret, nor would trade any of our experiences. I met some really great, interesting people whom I will never forget. I also acknowledge how hard it is to raise a child with special needs; my child in comparison to many children I have met is extremely mild. I was asked by the government to join in on an advocacy board but I had already started my job by then. I don’t regret my decision; I think that one day I may go and pursue that avenue, but it just doesn’t feel right for me right now.
Anyway that’s a glimpse into our journey. =)