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My Son Matthew

 

Me and my precious baby boy, Matthew (1987)

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.

Matthew 1987

Very sleepy Matthew, about 10 days old (1987)

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.

Just 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.

Matthew, 10 years old

Matthew, 10 years old (1997)

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.  :-)

Matthew on the Trampoline (1997)

Matthew on the Trampoline (1997)

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.

Matthew's 20th Birthday

Matthew at his 20th birthday party busting a gut laughing at the huge piece of cake he gave to his brother. (2007)

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.

Matthew, 17 years old (2004)

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.

 

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28 comments to My Son Matthew

  • Your son is lovely; I will definitely try the sausages his way.

    Astrid

    [Reply]

    Starlene Reply:

    Thank you Astrid! I will let him know. :-)

    [Reply]

  • He looks like such a lovable guy….just someone who is impossible to dislike. Thanks for sharing Starlene. Wish I could meet you and your family in person. :)

    [Reply]

    Starlene Reply:

    Hi Kristina, thank you. He has his moods but he is really a very sweet person. I hope some day we can meet in person, that would be fun! :-)

    [Reply]

  • Kristie

    It is obvious your deep love for Matthew. It made tears come to my eyes.

    [Reply]

    Starlene Reply:

    :-) Awwww, didn’t mean to make you cry!

    [Reply]

  • Liz

    Thank you for sharing your story. My 14 month old daughter has a genetic disorder that is fairly similar to Down syndrome. It’s nice to get a glimpse into another family that is so far ahead of us in this journey.

    [Reply]

    Starlene Reply:

    Hi Liz, you’re welcome, I’m glad you found it helpful. We are fortunate that Matthew has always been very healthy and generally pretty happy. I ran into a mom a few years ago whose son was in therapy at the same Easter Seals as Matthew and she was having a very hard time with her son. She told me some of his behaviors and now I wish I knew how to get in touch with her because it sounds to me like he needs to do GAPS. Thanks again.

    [Reply]

  • Starlene, this is such a special tribute to your son and all children with Downs. As a nurse, I have seen many Downs babies, and I absolutely would not have suspected it based on Matthew’s face in his baby photos. I loved reading all of Matthew’s sayings and jokes. What a wonderful blessing he is, and how blessed he is to have you for his mother! Thank you for sharing with us about him:-)

    [Reply]

    Starlene Reply:

    Thank you Nicole. I appreciate your confirmation that you would not have recognized Down Syndrome either. I am glad you enjoyed. :-)

    [Reply]

  • Isabelle

    Thanks so much for sharing this Starlene. I love how open you are about you and your family’s journey. I am so sorry you had that experience with a pastor. How terrible that a person of God teaches such hate. Matthew seems like a lovely person. He’s so fortunate to have a mom who loves him so and wants the best for him. Say hello to Matthew. You can tell him he’s famous now. :o)

    [Reply]

    Starlene Reply:

    Hi Isabelle, yes it was very unfortunate that she had to be so superstitious and have such outdated beliefs. Thank you for your kind comment and Matt is enjoying the comments. :-)

    [Reply]

  • Thank you for sharing the beautiful Matthew with us, absolutely made my day to read about him and to feel in my heart the love you have for him. A long time ago I read this saying regarding special blessings like your son: “God puts most of us on this world to learn, but there are a special few who are brought into this world to teach.” What a blessing to meet as great a teacher as Matthew…

    Thanks again.

    [Reply]

    Starlene Reply:

    You’re welcome, Karyn, I’m glad you enjoyed my post. And yes I agree he is definitely a wonderful teacher. I have learned so much from him and I am so blessed to have him in my life.

    [Reply]

  • Kir

    He is beautiful! How precious! Thank you for sharing…

    [Reply]

    Starlene Reply:

    Kir, thank you and you are welcome. :-)

    [Reply]

  • What a beautiful story, Starlene – thank you so much for sharing about your son Matthew! I have been so inspired by you and your love for your son!

    I am with Isabelle above regarding the “pastor” you described and would add that people like this are not representing Christ at all to say an teach such hateful things. How appalling. Just remember that not everyone who claims to be in Christ (a Christian) truly are – you will know them by their fruit, Jesus said. So I pray that you will look to the Lord and not heed ignorance such as this. Sorry if I sound harsh, it just truly upsets me to see people proclaiming such anti-biblical doctrines.

    What a blessing you are for loving your son so much that you are willing to be “mean” – LOL! I think a lot of our kids think we’re mean at times for making them avoid the bad stuff and eat the good stuff. But it sounds like his healthy lifestyle has helped him to live life to its fullest – so keep up the great work, sweet friend!

    With blessings in Christ, Kelly

    [Reply]

    Starlene Reply:

    Hi Kelly, thank you for the kind words. Yes it is appalling the things she said. Thankfully I am finding substitutes for some of Matt’s favorite foods. He has never really been much of a sweets eater, so that part hasn’t been too much of a challenge. I do hope that he will have a long healthy life eating these real foods. I am just so glad I was able to open my mind to trying GAPS. I never knew what an answer to prayer it would be. Thanks again.

    [Reply]

  • Olga

    My heart was so sad for days, that you were told as a child that children with Down Syndrome were Mongoloids. What a horrible feeling towards people who are born different! You are such a wise person to see the beauty in your son, and to learn different ways to care for yourself and your family. That is what I really enjoy about reading in your blog. You are always searching and learning new ways to become well. Thank you for sharing your sweet son with us.

    [Reply]

    Starlene Reply:

    Hi Olga, you know I always thought I was growing up in a more enlightened era but since I’m 49 now it was 40 years ago that we were hearing stuff like that. Thank you for your kind words, and I’m glad you enjoyed hearing more about Matt. :-)

    [Reply]

  • My goodness, Starlene. He is so beautiful. My brother had cerebral palsy & it joys my heart to see children with special needs (and into adulthood) raised by such caring moms &/or dads. Those with special needs are such beautiful people! Those with special needs are brilliant in ways that most of society will never be able to realize.

    [Reply]

    Starlene Reply:

    Thank you Michaela! You know one of the things I notice the most about Matt is his innocence and that he doesn’t worry about much. And the things that he does fret over are important to him and can usually be easily solved. Thank you for the kind words, truly appreciated.

    [Reply]

  • Oops. I got repetitive in that. My apologies!

    [Reply]

  • I love this post! Thank you for sharing your story! What a beautiful person Matthew is. And, you know what? He gets some of that from his mom! :) You are a wonderful person and I am thankful that I have had the opportunity to get to know you better!!

    Hugs!

    P.S. This made me so angry: “Mongoloids” she called them. “Serpent seed (i.e. A child of Satan)”. What a sad world we live in when a pastor can say something like that about another human being. Sad, sad world.

    [Reply]

    Starlene Reply:

    Oh thank you for the kind words, Jessica. I am glad that we have gotten to know each other better too! Yes, that woman pastor was just so backwards and superstitious. I am glad I know better now.

    [Reply]

  • Hi Starlene!I can’t begin to tell you how upset and angry I was when I read how your pastor (of all people) referred to people with DS. I have a 12 year old sister with DS and I WOULD NOT trade her for the world! Freedom is such a huge part of my life (and the rest of my families). She has a huge heart and is a ray of sunshine. I hope that one day people will be able to look at others with DS or other “disabilities” for more than their diagnosis… they are SO much more! I am truly blessed to have Freedom as a sister! :) Thanks for sharing your story!

    [Reply]

    Starlene Reply:

    Hi Mandi, I agree it was pretty disgusting. I just can’t see how a person with Down Syndrome could be of the devil! Sure Matt has days where he is grumpy or gets upset, but for the most part he is easy going and good natured and a joy to be around. Your sister sounds like a very lovely girl and lucky to have you for a big sister. Thank you for stopping by and commenting! ~Starlene

    [Reply]

  • [...] My son Matthew asked for “mollies” a few nights ago.  My husband and I, as happens on occasion, were stumped.  Matthew drew pictures and pantomimed. Finally after about fifteen minutes, my husband got it.  Tamales!  I have been missing tamales, living in Arizona, especially at this time of year.  Our Hispanic community is making and selling tamales everywhere.  Even at work for our potluck someone brought homemade tamales, which of course I was not able to eat since they contain corn. [...]

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