My mothers perspective (letter to doctor)

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A parental perspective

I will attempt to put into words, my thoughts and feelings in dealing with a child with special needs. Due to the depth and the detail of the problem, I can only gloss over some of the most crucial events that occurred and the feelings and emotions that the caused.

The birth of my son occurred in 1978, like any new mother I was very exxcited and a little bit scared. The responsibility of being a mother at age 19 was not something took lightly, and I vowed at that time to be the best mother I could be. For the first 4 to 6 months of my sons life things seemed to progress normally. He was a good baby, a good sleeper and seemed to eat well. As he developed and started to crawl, there were some noticeable changes. He rocked, he crawled backwards, which at this stage was, I am told, very normal; the thing that I didn't view as normal was the fact taht even at this stage everytime he was put down for a nap or for the night, he would lift his head right off the mattress nad bag it until he fell asleep. you may ask, how did he go to sleep this way, it is a question I still ask myself, I don't know. I voice my concerned to the doctor and was told that many new babies do this, that it somehow gives them comfort. Like any new mother, unsureof herself, I took the doctors word for it, and breathed a sigh of relief.

As my son grew older however, there were more signs, he hated loud noise of any type, he couldn't stand to have dirty hands (he would become so upset there would be rages), he was late to walk and almost 2 years of age, he seemed to shun being held, he was sstill head banging and he seemed to develop a fascination for repetitive actions. These actions came in many forms, from flicking light switches, to throwing things down the toilet and flushing repeatedly, to playing with blocks-building them up and repeatedly knocking them over. We are not talking a few minutes or even half-an-hour we are talking hours. To me it seemed strange that othe children had a very limited attention span but my son could do this by the-hour. It also became very noticable to me that my son now in his second year did not seem to be listening to me, or even aware that I was there, unless I got right down in his face, even then he didn't seem to see me, but seemed to look past me, or right through me, it seemed to me his eyes had almost a glazed look abou them. The only thing I could think of that this resembled, was autism. Again I voiced my concerns to the doctor. I was asked at this point if my son could talk. "yes," I said, he talks. It seemed to be the one area he was advanced in. Again I was told that he seemd to be developing normally, he could now walk, he could talk, he could see and his hearing seemed to be fine. This was not autism. I was being overly worried and over anxious, I was told. Again, like a fool, I took the doctors word for it.

As my son got older, I decided that it was time he interacted a little more with other children, so enrolled him in nursery school. He seemed to dofine, although he had a definite preference for solitary play. By the time he enrolled in kindergarten, I was still worried, he had a definite preference for solitary play. By the time he enrolled in kindergarten, I was still worried, as the strange behaviour continued, so enrolled him in nursery school. He seemed to do fine, although he had a definite preference for solitary play. By the time he enrolled in kindergarten, I was still worried, as the strange behaviou continued, but decided the doctor was probably right and I was just overreacting, what did I know, after all, I hadn't gone to school for years to become a doctor.

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In kindergarten solitary play was still the preference, but he did seem to interact with a few select children. It was at this time, through schoolscreening that I fond out that my child did indeed have a hearing problem. It was discovered taht he had almost no hearing in one ear and that the othe rwas partially blocked. Bingo, I thought this must be the cause of the head banging, etc. Although, I can remember wondering why if my son couldn't hear properly, did he have an aversion to loud noise. Again we went back to the doctor, who put us in touch with an ear, nose and throat specialist. Confirmation from this doctor, told us that indeed, he had a hearing problem. Tubes in the ears was recommended and followed through on. Things seemed to improve a little, although, the rocking and head banging continued.

As my child got older and moved up through the primary grades, he seemed to learn well and was even tested for a special class for gifted children. He did well in school and seemed to enjoy it. Things seemed to be improving. Great I thought, the doctor was right and you were wrong. My son seemed to do well right up until grade five or six, [Me: She remembers incorrectly here, I put on weight in grade 3, because after that I started to get picked on mercilessly ever since] at which time he put onsome weight and became the child who was picked on and bullied. His grades were still fine, but school had become a place he hated but tolerated [Me: I started to hate school long before grade 6 to 8, for your information]. This cycle continued for three more years, school and people in general, were tolerated. Being solitary was preferred, both at home and at school. I remember voicing my concernsto teachers throughout public school and being reassured that my son was a good student, he wasn't a trouble maker, a bit quiet perhaps, a daydreamer was one teachers opinion, not one to interact or volunteer any answers during class unless pressed, but in general a nice quiet boy who most of the time did his work. Again, I told myself I was imagining problems where there were none.

I suppose my actions werethose of a typical parent who wishes the best for their child and sees their child as the best, the brightest and the absolutely most wonderful being one ever produced. I was not being honest with myself. By this time in my life I had two other children and in all honesty had so much to cope with, motherhood and all it entails, as well as a business to help run. I probably as I look back now, just wishedthe problem would go away. I can see now, that I didn't want to believe that there was anything wrong with my son. I fooled myself into believing that everything would work itself out and things could only get better. I believe too, that in my zeal to help my first born adapt, I neglected the other two. I am speaking not of abusive neglect but the neglect that comes when you feel one requires more time from you then the other, because you feel the others can cope and don't need your help and guidance as much as thechild with the problems.

I had some of the same experiences, told it was a phase and nothing to worry about.

I do not have a diagnosis yet but the process is starting.

We do not nessessarily want to change our children but it is in their best interest that we understand the way they think and view things. Commincation to them in ways they understand.

My son is in grade 4 and all along I felt there were things different but nobody really gave it serious consideration.

As mothers, most of us do the best we can with what we have. My oldest was born in 1981. Most of her childhood, as that of the child described above, was pre-internet. The days before the information superhighway were a different time altogether. If you wanted information on a medical condition, you either had to settle for what little you could glean at your local library (usually with multiple children in tow); or try and find a medical library you could access, which required a great deal of medical knowledge to even use (try and look up psychiatrist in a dictionary without knowing it starts with a "p" - same kind of needle in haystack search).

I "knew" there was something not quite right about my oldest, but my doctor brushed off everything from my complaints of her projectile vomiting as an infant (until I brought her to his office and burped her on HIS carpet) to her seeming inability to connect with anything - dolls, toys, etc. Many, many years later, we came to find out she suffered from attachment disorder and is now also bipolar.

My 11 year old is comparatively lucky. When I got frustrated with the doctors (and there were many of them) telling me he was just fine, he'd grow out of it, or I needed to be a better displinarian - I googled. After googling his symptoms and behaviors for just one half hour I came to see only two answers would appear, AS or HFA. I read an article on AS online, and within the scope of my lunch hour, came to understand my child better than I had in 10 years and twice as many specialists.

And remembering the year your child (especially if they are not an only) gained weight, or began have specific problems - it can be difficult in looking back. We aren't machines, we are human - other stuff keeps getting stuffed in there to remember, and something has to go. I can't keep track of which of my boys is left handed. We moved one time and I registered one of my kids in the wrong grade. The devil IS in the details.

The fact that she loved you, and did all that she could and thought was right to help, even to what she felt was the expense of her other children - that speaks volumes.

I have three boys, the oldest of whom (aged 5) has AS.

My second son is three and lovely. The problem still is, and has been since he was born, that my eldest son (although he loves him) can't tolerate his presence very well and this leads to hellish times for all of us. I probably don't need to elaborate.

What this means in practice is that my second son has very very often been put to bed just that little bit too early, has been sent to nursery just that little bit too often for just that little bit too long, has been comforted by someone else when he fell over etc etc etc.... And it hurts him and me a lot.

The baby (10 months) and my AS son bonded and adore each other deeply from first sight and my oldest son is lovely and calm when he is around.

Things are getting easier for us at home in as much as the 2 oldest boys are now able to be together in the same room for limited amounts of time. If you'd told me that 2 years ago I just wouldn't have believed it possible. I now have the opportunity to make it up to my second son and I do it as often as I can.

Mordy, just thought I'd suggest that God orders our steps in spite of our interventions or noninterventions. You didn't listen to your "gut" feelings about your child but somehow the child survived. How much different would things have been if you had done it differently? No one can tell.

Your child sounds much like I was as a child. I was a baby who completely recoiled from touch, hated being held and was very solitary and rarely spoke. I did not enjoy toys but did enjoy sitting and staring or reading encyclopedias. I was extremely smart and in gifted classes. I was extraordinarily shy and never volunteered anything. The sound of my own voice was shocking and disturbing to me. Loud noises freaked me out as well as strong smells. Touch was very irritating and made me angry. I had absolutely no sense of humor or sarcasm and had to be taught what these things meant.

People were a puzzle to me and I preferred nature and animals to humans. I had no feelings except extrem dullness, panic or shock until somewhere between 8-10. I did not "love" anyone, or feel strong attatchments to anyone and had no reciprocality of emotions. I grew up in a "normal" family. My parents thought that because I was adopted, I was different. They thought that I had been abused so badly as an infant that I was very timid.

In spite of these problems, I learned through experience, by observing and mimicking, how to behave and act more normally. I deduced that my feelings were abnormal, since I found that others did not share them, and I tried to figure out how I should act in a given situation, based on similar situations that I had observed, then acted accordingly. The experience of being forced to live a "normal" life were actually good for my adjustment. The only exception to this would be my teen years where I was out of control with frustration, impulsive and suicidal.

I don't know your entire situation but I look over my own life and see that "it all comes out in the wash". Of course, everyone is different and I lived my life by my faith and I think that helped greatly.
I hope that you and your child can live, learn and grow together happily and maybe a diagnosis can help facilitate that. The people on this website can really give hope to an otherwise perplexing situation.
God bless you.