This blog is to thank everyone who has become a support system for me. I always knew it was important to find other parents who were living with the challenges of raising a child with special needs. People who understand the joys and frustrations of the day to day adventures of raising our kids. Sharing stories, comparing information, raising awareness and making new friends are only part of it! Knowing that you are not alone, that there are people who understand, people you can talk to about anything you are feeling, that is the important part for me. Sometimes I don’t want to talk to my family about K and B. They don’t understand the emotional, physical and financial demands of raising children with SN. For example my mother in law, who I adore, has criticized me about why I didn’t fight for services for K sooner. Telling her that the services for Down Syndrome are different than those for Autism so it’s next to impossible to find them for both was like telling her the sky is green. She just didn’t accept it. My sister once told me that B seems to her to be the type of child to hurt small animals! Try explaining ADHD after hearing that! I love her, but that comment really hurt.
Not only do I believe support from parents is important, but I believe businesses and workplaces should also be supportive if some of their employees are dealing with children with SNs. Hubby is going through a hard time with his workplace right now. K had to have 2 eye surgeries last year, which meant we had to make bi-weekly trips to the hospital for checkups, etc. We would try to make appts outside of his work hours, but sometimes that proved to be impossible. Hubby’s contract states that any special paid leave is approved by management, but management didn’t think it qualified for special leave. Hubby had to use all his vacation and sick time to cover the lost wages, and even some of that was denied! We would get paycheck after paycheck with days deducted! He decided to go to senior management and his grievance has now gone national. I hope above hope that the corporation understands and perhaps changes the special leave description. But unfortunately ignorance is more prominent than awareness. I told him he should take K to the meeting with him and leave the room for a “bathroom break”. Let’s see how they handle him for 10 mins!
Enough ranting, I’m supposed to be thanking those who DO understand! Thank you to all the teachers and EAs at K’s school for their hard work everyday. Thank you to the doctors and nurses at The Hospital for Sick Kids for their professionalism and comforting words assuring me K will be able to see again. But most of all, thank you to the amazing online community I have found (Team Twitter you know who you are) who make me laugh, cry and learn new things everyday! I am so thankful to have found kindred spirits! You have finally got the thought through my thick skull that I am NOT alone!
How much do the professionals actually listen to the parents? You would think that, as professionals, they would take the parent’s observations and comments seriously. We knew as soon as K was born that he had Down Syndrome. We got involved with programs that we believed would help him. He went to a nursery with a couple of other children with Down’s but I noticed K was not developing as fast as those other kids. I knew he would eventually learn what he needed to learn. The staff couldn’t handle his behaviour so they would keep him in his chair while the rest of the kids played in the park. I was shocked that they would do that! What made him any different from the other kids with Down’s? You see people with Down’s working or living somewhat independently all the time. I was sure K would learn all that too. He would just do it in his time.
I noticed there was something “different” when K was 7. He had just started walking, which I was told was due to hypotonia (low tone in the muscles). He still had not said a word and he still was not toilet trained. We began with speech therapy but we had no luck. They didn’t suggest anything else. We tried every trick in the book to get him to go potty. Nothing. My doctor just told me he was severely developmentally delayed. I accepted that and dealt with his behaviours as best I could, waiting for him to finally learn something. It wasn’t until a new staff member at K’s respite started when he was 13 that she suggested he may also have Autism. She would notice certain characteristics in him that show up more with children with Autism than DS. He would go off and play by himself. He would go into his room and sit there in the dark and quiet, listening to his favourite musical toy. Sometimes he would play with cars appropriately but sometimes he would just make the wheels spin. He would be precise in lining things up, such as toy cars, etc. We went to our family doctor who gave us a test to fill out. As I was reading it I noticed more and more characteristics, such as hand flapping and spinning. The test showed that, yes, he also had Autism. He was 14. I finally got the diagnosis I already knew.
There are programs for DS and programs for ASD but what happens when a child has both? I am still waiting for the answer to that. He is now involved in a wonderful program that has started him on Behavioral Therapy and Occupational Therapy. He will be seeing a neurologist there for his seizures. They told me that the only option I have, besides having him stay at home, is permanent care. Yes, he is on a crisis list, but that could take years because of his needs. I still hold out hope for him for the future. He has progressed by leaps and bounds just in the last few months! My favourite saying about K is “you never know what the future holds”.
As I have mentioned before, K has always been a very happy, loving child. Even though he was happy playing by himself, he did enjoy some interaction. He has always liked Peek A Boo! Even to this day I can peak around the corner, say Boo, and he will laugh. He laughs at his toys. He laughs alone in his room when he should be sleeping. The funny thing is, he wouldn’t laugh at jokes. He wouldn’t laugh at TV shows when something funny happens. He just didn’t understand that it was funny. But at school he laughed watching the other kids play bowling. He laughs when he empties out my linen closet and hides inside. Maybe as he gets older he is starting to understand humour better.
He loves being tickled. Sometimes I don’t even have to touch him! He sees my wiggly fingers coming and laughs away! Recently, hubby has found a spot right under K’s arm that makes him laugh in a completely different way! You can’t hear him laugh that way without laughing yourself! It is so contagious! I asked hubby to try to describe it so I can write it here. I think it sounds a little like Goofy, but hubby said “It sounds like K. Unique.”
On Feb 8th I shared a very personal story. Having a mental illness while raising 3 boys is hard enough, but when one has ADHD and the other has Down Syndrome and Autism, it can be next to impossible to cope at times.
It all started after B was born. I was still trying to learn how to deal with K and a new baby when I developed postpartum depression. My mother was living with us at the time and I came to depend on her and hubby to take care of the boys. I couldn’t do it at all. I was questioning my decision of having a 3rd child. I felt so guilty thinking B would never get the attention he needs. I went on medication and started feeling better. I went back to work. Things went well for awhile.
Then, when B was 4, I had a nervous breakdown. K was 8 and S was 10. I had to spend time in the hospital. This time was very hard for B. He was always asking if I was going to die. Everybody assured him that Mommy was just sick but the hospital would make it all better. When I was released B became very clingy. Not that I blame him after what he had gone through, but it became suffocating at times! Every parent loves hearing their child say “I love you Mom” but B would say it 100s of times a day! He continued doing that until he was diagnosed and put on meds. He still tells me he loves me a lot, but now it’s less annoying. I hate that my son has abandonment issues because of my illness.
Bi-polar has 3 stages:
When I am “well” which is what I call my “plateau of normalcy”, I feel great. I can focus and do my job. I play with the kids and keep my house clean. I find it easier to cope with the day to day issues with K and B. This stage can last years for me. My last one lasted 5 years.
When I am manic or “high” I feel like I can do no wrong. I still play with the kids, keep my house clean, I can still work. Unfortunately it is the time when I can’t control my own outbursts. It’s the only time I yell. But in my mind it is all justified. I have actually been reprimanded at work for “over-stepping my bounds”. I have racing thoughts and I talk a lot. This stage can last days to weeks. My family can certainly tell when I’m manic. But they know what comes next.
After every one of my manic episodes I have a depressive episode. The closest I could describe it would be a rollercoaster. Once you get to the top of it, eventually you are going to come down. This is the stage that varies for me the most. It can last from a couple of weeks to a couple of years. The one I am suffering with now has already been a year and a half. I am trying to learn to identify my “triggers” (issues that can cause my depression to worsen), but what happens when your triggers are your kids? It’s not like you can stop that one.
With my depression comes bad thoughts. I think the worst one is “I am tired of being a Mom”. I will start to cry while I change K’s diaper, cursing him that he can’t use the potty. I have spanked K when he pulls my hair or pinches me, which teaches him nothing. I won’t play as much with B as I used to. I lose interest in my kids! I would rather hide out in my bedroom watching TV.
I am in therapy and it is really helping me cope with everything during this depression. I play with the boys again. I try to keep my house tidy. I know I will get back to my plateau soon, I always do. I’ll go back to work. But the stressors are still there, they will always be there. I just have to learn to deal with them.
I received B’s course list for when he starts high school in September yesterday. First of all, I can’t believe my baby is starting high school! Secondly, due to his ADHD, I wondered what courses he would want to take. Usually B will go with the easy route, so I was expecting him to choose Drama or Food and Nutrition. He also knows that there are certain courses he has to take all through high school if he wants to design video games one day.
B is on what is called an IEP. It is an Individualized Education Plan. He has his regular class but then he goes to another class for Math and Language. He is still only reading at a grade 7 level but his math has greatly improved! The IEP also means he must take Learning Strategies in High School and can only take Academic courses (as opposed to Applied, which are university prep courses). When I heard that my initial thought was that his future was so limited! Does that mean he is restricted to college? I was reassured by his teacher that it all depends on his marks. If he does well on the Academic in grade 9 he can switch to Applied the next year. They just want to make sure he only takes on what he is capable of taking on. If we push him too hard at the beginning it could backfire and he will get discouraged. When he gets discouraged he gives up.
So B and I sat down last night to go through his course selection. Besides the usual English, Math, Science, etc he had his choice in Arts and Electives. He didn’t choose Drama, he chose Visual arts. And he didn’t choose Food and Nutrition, he chose Exploring Technologies. He was very excited with his choices and even told me he would try extra hard so he could switch to the Applied because he really wants to go to university. I was so proud to hear that! No short cuts, no easy way out. He did his research and knows what he needs to reach his goal. I hope beyond hope that he continues with that attitude! He seems to be turning into a man right before my eyes!
I was so proud of K this morning! First of all he kept his pajamas and diaper on all night! (Which is a miracle in itself! Usually I find him in his birthday suit with a wet bed) Then he used his picture board to ask for his breakfast. Today he wanted toast (as always), applesauce and milk! I asked him to say Please and he kissed my cheek, which IS his way of saying please. He helped me get him dressed and then we waited for the bus to come. Because he had been at respite, his wheelchair was at home. Usually we leave it at the school because there is the only place he uses it daily. If we have to go somewhere we ask the school to send the chair home and then we send it back to them. Anyway, when K sees his wheelchair he automatically thinks he needs to sit in it. I also think he prefers the ride over walking! When the bus arrived I walked out with K and got the wheelchair out of the garage. Preparing for a fight (since he is not allowed to use the chair at home) I told K to stand still while I wheeled the chair to the bus. Instead he went ahead of me and started running away (its actually walking very fast). I quickly tried to run after him but he went straight to the door of the bus and walked up the stairs! I brought the chair over to the driver to put it on the bus and by the time I got on the bus he was already sitting in his seat! So I strapped him in and away he went!
That was the first time he seemed to know what he was expected to do at home! I thought for sure I would have either had to fight to keep him out of the chair or chase after him as he ran down the street. But he surprised me in the most amazing way! WTG K!
One of the joys of motherhood is playing with your kids. I remember playing Peek A Boo with S and have him laughing away! We would play all kinds of board games, video games, etc. Always a variety and always TONS of interaction and imagination! When your child has special needs, the playtime can be completely different.
K was always a very happy baby. But he didn’t really want any interaction with us to play. He was quite happy sitting in his bouncy chair with his musical toy and have it play over and over. We had 8 hours of Barney the Dinosaur because that is all he would watch. When we went to the park the only thing he wanted to do was go in the swing. And he didn’t want to be pushed back and forth, he wanted to be spun around! That was his favourite thing to do. It still is! He will put his toy up to his ear and dance around in a circle, or sit in his spinny chair and spin it so fast he’s a blur! I try not to laugh but it is funny when he gets dizzy. He always spins near a couch so he always has a soft place to land!
One day I got a note from his school saying that he had gone to grab a toy bowling set. He had set up the pins in a straight line and was using the ball to knock them down! We had never taken him bowling so I wondered where he figured it out. His teacher said he had been watching the other kids do it and had laughed when the pins fell down! Needless to say, Santa brought him his own set at Christmas! He plays with it everyday, setting them up, always in a perfectly straight line (very characteristic of Autistic children), and then he will knock them down! So we are averaging a new toy interest once every 5 years or so! I wonder what he will be interested in next?
Playing with B had its own set of challenges. His ADHD made it hard to play anything that took awhile to play. But he would play video games for hours on end, when I let him. Sometimes it was the only way to calm him down. As he got a little older he wanted to play the same board games over and over until I had to hide them so he would play something else! It wouldn’t have been so bad but he would get so upset when he lost! And to be honest I just got tired of playing them! Trying to teach him about fair play was tough. If he couldn’t win he didn’t want to play. He was never into painting, colouring or crafts. He didn’t have the patience. So the only way I could keep him occupied and happy was to let him play his video games. He still gets upset when he loses, but hopefully he will get over that soon.
Now that all my boys are older, K is getting better at letting me play with him. He hands me the pins to set up and he will knock them down. I found a couple of video games that I enjoy playing with B. We just beat one together last week! It doesn’t matter what we play as long as we have fun! It just took a long time to find out how.