Today I am going to share with you some about my son Matthew who is 25 years old.
In a previous post I had shared what happened when my husband and I learned our son had Down Syndrome:
It was real hard on me and my husband. The world went black for about three days. We were told it was truly as if our son had died. For the child we had grown to love would be “more normal than not” but he would not achieve the life we may have already imagined and anticipated. He would still run and play, talk and laugh, but he would be limited.
At any rate, I have always appreciated that his condition was concealed from us for three months. You see as a youngster growing up our pastor had instilled a fear into us of people with Down Syndrome. “Mongoloids” she called them. “Serpent seed (i.e. A child of Satan)”. My siblings and I used to call each other stupid retarded idiots. Mongoloid idiots. And I was always afraid of people with Down Syndrome. What a blessing that my child’s condition was not revealed at his birth or it could have affected my bonding with him. I loved him so much I never knew it was possible to love another human being so much.
Erin left this comment to my post Genetic Mutation MTHFR (5,10-methylenetetrahydrofolate reductase (NADPH) and Down Syndrome:
Starlene, you should conclude how it has been to raise your son. I’m sure you love him so. I love people with Down Syndrome. That is why I went into Special Education because of two boys in high school that I just loved. People with Down Syndrome are as stubborn as I’ll get out, but so, so sweet. I’m sure it’s different being their mother. It is probably very frustrating, and life does take a different route because of it, I’m sure. But i would say just the opposite of a child of satan, I always felt like my friends (and students) with Down Syndrome were angels.
Erin, thanks for asking. I’d be glad to share.
When Matthew was three months old at a well baby checkup our pediatrician stated that he would like to have Matthew tested for Down Syndrome.
We were stunned since we had no clue. Matthew did not look like he had Down Syndrome. When I called my sister that night, who had given birth to a daughter with Down Syndrome two years earlier, she told me to refuse the test. She said, “He’s just trying to make money off you because he knows about my daughter.“ She couldn’t believe it, because the photos I’d sent did not indicate he had anything wrong.
We did allow the doctor to run the tests, and he pointed out the characteristics which had alerted him to Matthew’s condition, which indeed he had noted at Matthew’s birth, but he wanted to be sure before he said anything.
He pointed out the simian crease in Matthew’s palms (which my father in law had – hmmm… now wondering if this is a MTHFR thing as well since father in law was born with Tetralogy of Fallot which is an MTHFR condition), the wider than normal space between his big toe and other toes, his low muscle tone. I had also noticed that Matthew did not smile when the books said he should, but that wasn’t such a big deal, children develop at different times. So we basically had no clue whatsoever when we found out.
We had three months of bliss, as I said, I’m glad for that. For one thing, Matthew is my son Matthew. His having Down Syndrome is way down the line. Matthew isn’t a “Down’s Kid” he’s a “Stewart Kid”. I sometimes forget to tell people he has Down Syndrome, and since he does not look so obviously like he has Down Syndrome people don’t even realize he has Down Syndrome. They realize he is developmentally delayed, and I soon remember to let them know, but it’s like an after thought for me, because he’s Matthew.
After we learned he had Down Syndrome, I visited with a woman whose daughter has Down Syndrome. She told me to always remember, “He will be more normal than not.” And I have found that to be true all these years.
We got Matthew started in early intervention when he was six months old and the Easter Seals program taught us how to work with Matthew at home. We went in once a week for therapy and continued working with him at home. The speech therapist was thrilled that I was nursing him and she said to continue for as long as I could since it was the best speech therapy Matt could have.
After Easter Seals we found a Montessori program for which Matthew was eligible. He attended for two years, and next we entered the public school system. The school psychologist and principal were on my side in mainstreaming him into a regular classroom. Unfortunately the teacher was not a good fit and she kept nagging at me to put Matthew into school for more hours each day (when he was showing regressive behaviors which told me he was at his limit). The principal kept going to bat for me and then one week he was out having surgery and the teacher pushed too hard by asking the social worker to come by my house to talk to me about the need for Matt to be in school for a full day — at the age of 5, when his mental age was about 4!! I decided to pull him and we homeschooled from that point on.
When Matthew was 14 we were required to take him to a psychologist to have his IQ tested. Because he didn’t know common things that people normally know, like the year, the month and the date, and some other common day to day knowlege, his resulting IQ was 40.
It was disappointing but you know, if there was a test for figuring out IQ based on the things a person knows and enjoys, I’m sure his IQ would be much higher. He loves to draw and write the letters of the alphabet, and he can write his name from memory, as well as Mom, Dad and his brother’s name. He can count to ten, and he knows when it’s Friday because of Cartoon Friday. When he’s sad, he says he is a little boy and he tells us that he has to get his emotions under control. “My emotions,” he says. He has a wonderful silly sense of humor. He comes up with some pretty funny jokes at times, cracking us up, making us wonder what really goes on inside his head.
He knows how to cook quite well, in the above video he is sharing the spices he uses to season sausage. He is very animated when doing something he loves.
He knows how to make white sauce from scratch. Yes – putting butter in a pan, mix in flour, then whisk in milk and bring to a boil while stirring continuously. And his most famous recipe was Pizza Pasta. A concoction made with noodles, tomato sauce, cheese, pepperoni, ham, black olives and mushrooms.
Although his recipes have had to change since I have him on GAPS so he is learning to cook new recipes.
He can use the Spiralizer – remember he helped me put together a video to review the Spiralizer? He recently learned how to make zucchini spaghetti and when he proudly told his Dad he proclaimed, “I’m a man!”
He often says he is a grown man, especially when I ask him to get into the shower or ask him to take a detox bath. In this house of men, there are certain things men do and don’t do. He sets me straight when I don’t realize one of the rules.
We have family pictures on the wall. He sometimes stands in front of the pictures and mutters to himself about how he wishes I could be a nice mom like I used to be in the pictures when he was a little boy. You see, taking bread and crackers, flour tortillas, fast food, pasta and all his other favorites away has been hard on him, even though we did it very slowly. He can’t reason enough to understand that eating those foods causes him to have acid reflux, and causes him to overeat and gain weight. Sometimes he cries over the foods he misses, and that makes me feel like a mean, mean mother.
He does get angry sometimes, but for the most part he is mild mannered and easy going. He always apologizes and says, “My emotions, my emotions.”
He can play Nintendo Wii so well it is astounding. His brother and he used to play together when they were younger, and younger brother would say, “Go to the basement” and he would go down the corridor, down the elevator, into the staircase, down the hall and into the basement. I was lost watching on the screen, but he had taken that route so many times he could do it in his sleep.
He knows how to use the remote control for not only the television, but the DVD player. He realizes that his Dad isn’t too good with technology and tells him, “You stupid, get Mom.” This makes us laugh at the irony.
We’ve slowly, slowly transitioned him over to full GAPS. My younger son still brings illegals into the house, so Matthew sometimes gets hold of some things, but for the most part he is off gluten and dairy (except butter). He has lost quite a bit of weight in the last two years, and I’m so very grateful that I found GAPS, because like myself, my son kept gaining weight every year. I was so scared for him, and it’s such a relief to see the scale going down.
He is an excellent swimmer, and never had a lesson in his life. We went every day when the boys were young, every day that the public pool was open, we were there. I actually learned how to surface dive by watching him. We don’t go swimming hardly at all now, and it really bothers me to have learned how poisonous chlorinated pool water can be for our bodies. I wish we had lakes or the ocean nearby, because I love to see him swimming – he enjoys it so much.
That reminds me of one time we went swimming at a hotel in December 2004. Yes, we can go swimming in Arizona right in the middle of winter, since many places heat their pools. Of course as you know our body floats and he had a great time treading water, swimming, surface diving to the bottom of the 8 foot pool. When it came time to get out he swam over to the stairs and we’d been in the water about an hour. He started out of the pool and he groaned, “Ohhhh, pants wet. So heavy.”
Most of the time he is upbeat and happy, but he does get grumpy and aggravated and mad sometimes, just like all of us, he has his good days and bad days.
Recently one of my coworkers gave me an article written by George F. Will about his son Jon, who turned 40 this year. His son was born 15 years before Matthew. We were told the life expectancy for people with Down Syndrome was 50, and in this article Mr. Will states it is now 60.
Matthew will always live at home. I am glad I had him at 23, I expect to be alive for Matt’s entire life. I wish I could explain to him so that he could understand, that I’m not trying to be mean by taking so many of his favorite foods away from him. I wish he didn’t think I’m just being mean. By the way, he also thinks I shaved his head and that’s why he doesn’t have hair. In fact every time I cut his father or his brother’s hair, he starts cackling and laughing saying that they are going to be bald now. One of his personal jokes. :-) He started losing his hair at 2 1/2, and I’ve learned in the past couple of years that alopecia is an autoimmunity condition. I wish I had known all those years ago when the doctors told us there was nothing that could be done.
I can’t go back and change anything in the past, but we can press on to the future. I’m glad I found GAPS, and glad I learned about MTHFR. I used to feel so hopeless on how to help Matthew before GAPS, I worried so much about his health. I know GAPS isn’t any guarantee, but I feel it will improve Matthew’s quality of life to keep him eating real foods, just as it has improved my quality of life.
Thanks for reading.