Well, I have lots I could post about today. But what is on my heart is my need to accept.
A need to accept my son’s autism and what comes with it.
Our son has Asperger’s. That means that he has autism that is “high-functioning”. I have been reminded by mothers at autism support groups that I should be glad that my little one can talk. Yes, that is true and I need to be reminded of that. However, one thing that he does is talk. All the time. His mind, and hence his tongue, rarely ever shut off.
I will go into more of why I think this is so in a later post, but just suffice it to say that though I like conversation and interacting with my son, constant conversation and repetitive questions can be extremely tiresome.
He is awkward in public, though that has gotten better.
He has high anxiety. That comes and goes.
He has a problem with attention deficit. No official diagnosis there, but believe me, he has it. Whatever it is.
He has life threatening food allergies, and extreme sensitivity to sugar. Probable issues with gluten. Sensory issues. He has phobias about things like fireworks and feathers.
Oh, but I love him.
He also has an amazing memory.
- In 2009, he placed 3rd in a local Bible Bee competition and then in 2010 placed first locally and 27th nationally.
- He remembers the names of people we met years ago and while I am stumbling over their name, he reminds me.
He has such an innocent heart. Very rarely have I known him to try to do anything to hurt anyone.
He has stamina. Little things often shake his world, but he can weather “big things” like a real trooper. Like when he rode 50 miles in a Right To Life Bike-a-Thon — with a fever (we found out about the fever after he came home :-).)
Ah, my son.
In any case, today has been a day of real frustration. A day of frustration at him and his idiosyncrasies, but moreso at myself. I was so impatient today.
He argued with me about not wanting to eat certain vegetables. And argued and argued and negotiated…on and on and on.
He had a near tantrum over being late to a hockey practice due to our car getting stuck in the driveway in a snowdrift. It took about 10 reminders for him to unload the silverware in the dishwasher and then it still wasn’t done. I could go on but there really is no point.
I was impatient because–well, because he wasn’t doing things on my timetable. His disability gets in my way, takes my time and is an annoyance. And far too often I go against the command of the Bible and show my annoyance at once (Proverbs 12:16).
I need to remember the good and give thanks to the Lord. I need to accept.
A number of years ago, a dear friend gave me a poem about accepting disability. We were on the cusp of getting our son diagnosed, though unwillingly. We just wanted to know what was going on so that we could deal with it better and have some real resources.
This friend had a 20-some year old daughter with autism at the time. She was in full-time Christian work in the US with her husband and I later found out that she was struggling with leukemia. I read a transcript of a conversation she had on a radio broadcast of Family Life during which she mentioned that her child had autism, searched for her on the internet and made a bold phone call.
She called me back and mentored me through the beginning stages of dealing with what we now had in our family; a child with autism.
She called, prayed and shared.
Then this past year, she died.
I had never met Kathy, but her death left a hole in my heart. She also left this poem, from The Clowns of God by Morris West, Hodder and Stoughton, 1981. I hope that it helps you, whatever your lot in life.
You Need a Sign
Treasure him…
You need a sign.
What better one could I give
than to make this little one whole and new?
I could do it; but I will not.
I am the Lord and not a conjuror.I game this mite a gift I denied to all of you-
eternal innocence.
To you he looks imperfect,
but to Me
he is flawless,
like the bud that dies unopened
or the fledgling that falls from the nest
to be devoured by the ants.
He will never pervert or destroy the work
of My Father’s hands.He is necessary to you.
He will evoke the kindness that will keep you human.
His infirmity will prompt you to gratitude
for your own good fortune.
More!He will remind you every day that I Am who I Am,
that My ways are not yours,
and that the smallest dust mote whirled in darkest space
does not fall out of My hand.I have chosen you.
You have not chosen me.
This little one is my sign to you.
Treasure him…
I don’t know about you, but I sure needed this reminder today.
(Photo Credit)
wow… talk about a sign. Today was by far the hardest day I have had yet with my daughter ( whom I highly, highly suspect also has Asperger’s but has been through diagnosis after diagnosis with little to no luck thus far.) I feel so beaten down with this condition, that i have failed her, that I cannot help her as I would like to, and that we just don’t get the support that she needs. I have turned into “that mom” that medical professionals and educators have learned to run away from ( ok not really lol but I feel like it) because I will not stop until I find something that will help her function. We are currently doing homeschooling and I have changed her diet immensely to try to do anything to help her but this is one of the toughest challenges I have yet to face in my life. ( and wow have there been a lot lol) Sometimes, I will admit, it gets so very hard to keep in mind that she can’t help her behaviors…and it gets so frustrating. I often feel almost trapped because I am afraid of what she will do some days. I have to say that although I am not a religious person by many accounts, this had me in tears. and I just want to say thank you. 🙂
Oh Jami. Thanks. Your email meant so much to me. Feel free to share what you are trying diet wise. Off sugar? Gluten? Dairy? Have you heard of SCD? I am thinking about trying it. I would also love to introduce you to the practitioner I am working with now. She is working on our whole family on detox of metals and toxins. Please stay in touch.
hi i am 21 and have aspergers. i struggle with social situations. but i am highly intelegent my advice to you as a parent is instill a good foundation for the pursuit of knowledge. as my father once said books are the tools which to unlock the mind. so read to him and teach him toung twisters. by doing this my father has tought me and my “normal” siblings how to have a verry large vocabulary and are normaly excelent spellers. i have much more than just aspergers. neurofibromatosis siringomielia, and facieo scapula humeral dystrophy (muscular distrophy)
Anthony, thank you oh so much for your comment. I have often felt like a failure in being a mom (perhaps all parents feel this way as there is so much we could do better and the responsibility is so great), but one thing that we have taught our kids is to love learning. My son is always asking questions and is a very avid reader. My youngest doesn’t read yet but wants to be read to all the time. Tongue twisters is a new idea so I will have to work on that – thank you and blessings with all that you deal with. Did you, by chance, see my post on adrenal fatigue? I wonder if the woman whom we are working with might be of help to you as well. I have found that we are getting better as the heavy metals are removed from our bodies. Take good care.
Hi, I am a children’s pastor and have three young boys all with autism just joined my group. Whilst finding it challenging for one and a half hours per week I cannot imagine the dedication of the families. In saying this I understand the words in the poem you share, these three boys whilst a handful are the picture of eternal innocence indeed.
Thank you for sharing a day in your life with us.
God Bless
Kim x
You’re welcome, Kim. The challenges and the blessings go on every day. Blessings to you in your work.
This is a beautiful post. Thank you for sharing so openly and honestly, and also for sharing that lovely poem.
I so agree with you. I have a son with SPD and ADHD and feel much the same. I write about it sometimes at my personal blog – traininghappyhearts.blogspot.com I have also shared a poem you might like at https://signaturemoms.com/2011/04/13/in-honor-of-autism-awareness-and-national-poetry-month/ in honor of Autism and Poetry months.
I just read your poem. Beautiful. I am hoping to finish a post this weekend on Healing Our Son’s Autism. Sometimes, however, when I see the beauty that is him, I don’t really want him healed. I know you can understand. Blessings on you.
I am putting together a workshop on praying for your child with special needs and stumbled across your website. Great insight that will help me present something to these struggling moms.
Your post is what I needed this morning.
I have 5 kiddos and our 10 yr old has high functioning autism. Because of that it took me years of advocating to get the diagnosis for services. But while I was advocating hard and pushing to open up people’s eyes I forgot WHY I had him and need a reminder once in awhile.
That poem touched me like you wouldn’t believe. I always tell family members that his autism is affecting him not us.
It is so hard when we get annoyed or there is a delay in where we need to go, questions to answer. I’m glad I wasn’t the only one who felt that.
Our son has an amazing memory as well! He can tell you the dates of movies that came out last year. People’s birthdays he just met, etc. He is amazing and he reminds me of how much we are blessed every day.
Glad I found your blog 🙂 Thank you.
You know, I think I need this reminder every morning. Every minute. It is so hard not to see the blessings and to only see the problems, isn’t that so? With all trials, there is a blessing, but it is hard to see that a lot of the time.
Adrienne,
all I can say is WOW. My son seems to be ALOT like yours. He is a very tender hearted little boy, has high anxiety and has a fetish with balloons, ceiling fans and garage doors. Proverbs 12:16 hit me pretty hard! Life with an autistic child can be difficult, but SO rewarding! Thanks so much for this post! <3
Speaking of nutritional balancing, I just read two books which I think are very important for any parents with autistic or ADD/ADHD children to read in order to understand why their children behave the way they do. “The Gut and Psychology Syndrome” by Dr. Natasha Campbell-McBride and “Breaking the Vicious Cycle” by Elaine Gottschall. These books link behavior to intestinal health. They recommend the Specific Carbohydrate Diet which even goes beyond GFCF.
Amy, thanks for stopping by and for sharing!
Nutritional Balancing is actually a specific type of work done through specialized hair analysis and supplement and dietary intervention – it seeks to re-balance minerals in the body. I actually have read Campbell-McBride’s book. I have not done the GAPS dies, but we have thought about it. I still haven’t read Gottschall’s book but that is something else I am considering. We are already “beyond” GFCF as you say and eat only whole foods. I am not personally that familiar w/ the SCD, but I have had friends tell me that our diet is close to that.
Thanks again.
We see such huge accomplishments in what others would pass by as an annoyance. I understand!
I have two children on the spectrum, my son 12 has aspergers, and my daughter is three with a PPD-NOS dx. I have two other daughters that are normally developing although I do see some dyslexia in one and anxiety tendencies in the other. We are also homeschooling and am learning so much about diet and symptoms. I appreciate your post,as most days are such a mixture of frustration and adoration. This is the first I have heard about metals aside from mercury in vaccines. How do you test for that?
We are currently working with a woman who uses a technique called Nutritional Balancing. I have done metal testing on hair before, but it was done is rather cursory fashion compared to what we are doing this time.
My daughter has high-functioning autism also, although not Aspergers. I understand a majority of the things you are dealing with and know that some days it is hard not to pull out your hair. 🙂 Thank you for this post. It is nice to hear that I am not the only one with these issues, but also with these blessings as well!
What is nutritional balancing and how do you do that? My son has major allergies and high functioning autism (he reminds me of your son very much). We are GFCF and low sugar, also soy, peanut, almond and usually yeast free. Right now he has to take Claritin daily, but it really works and he’s so much happier and calmer on it.
I want to finetune his diet and help him heal.
Nutritional Balancing is a technique for re-ordering the mineral balance of the body to reverse toxicity. Of course, this is a simplistic explanation, but you can read more at Theresa Vernon’s website Theresa is the practitioner that we are working with. We have only been doing this as a family for about 4.5 months now, but so far it appears to be working. We have tried a lot of other things, but in the midst of it all I slid into severe adrenal burnout and was not functioning. Now I am in moderate burnout and it appears that I am dumping a bunch of aluminum in my hair. You can call Theresa and talk to her about how she works with you. It is a fairly reasonable regimen.
For my son, we went the route of allergy shot because I didn’t want to use OTC meds. Have you looked into that? Theresa also has herbs that may help with his allergies.
I’d be happy to correspond with you as I have time. We found that pulling our son off of sugar entirely was quite helpful. Are you using whole grains? That is important as well.
Stay in touch if you like.
Where do you get your aspergers support now? Or maybe what I mean is, do you have a favorite online group or something? I know there are tons of them – so much so that they are overwhelming. I’m struggling with wanting to keep my son’s issues from taking over the whole family, and having him be able to participate in “normal” activities. Thanks.
Oh, I completely understand. How old is your son? What are your major issues? I was a part of a support group about 1 hour south of us for awhile, but then I ended up with adrenal burnout and I really couldn’t function well at all so pretty much everything went by the wayside. Now I am working at getting all of us well. And doing this blog. And managing issues at home. We are talking and praying about starting an Asperger’s support group here, but a general health one is another thing that I may want to do. There are so many issues that it is hard to know were to spend one’s time.
If I have time and can help, I would be happy to. We have done a lot of dietary intervention and now we are doing something called Nutritional Balancing for all of us. Perhaps that would be something for you to look into. We ended up going gluten free (he has life-threatening allergies to dairy and other foods, so we were already off of casein), and then started an intense anti-candida diet so he is off sugar as well. I have been down a lot of paths in the “alternative medicine” world. We have about another 9 months to see what is happening with my son w/ Asperger’s. From some tests we are doing it seems that he has a TON of metal coming out in his hair. I have seen some improvement in the past 3 months, but it is still early to tell.
Please stay in touch if you’d like to know more. I think it is crucial to get support and then work on things as you can to see what might help our kids make progress.
I hope to do more posts on his Aspergers. I just need to take it all slow so I don’t overdo it again :-).
I found your blog through a blog carnival with your hummus recipe and just wanted to tell you that as a sister of a brother with moderate functioning autism, thank you for this post! It was so beautifully worded. I thank God for my brother!
all i can say is thank you.
I really needed this today! I have had little to no patience this morning with a seemingly demanding two year old, only to realize that the problem has been me determined to get my agenda done for the day and seeing anything and everyone as an obstacle. I really appreciate what you said and these reminders of what is beautiful and what God calls us to truly focus on.
Oh how easy it is to get frustrated at our kids. All you can do is remember you’re not perfect (and you’re not supposed to be), apologize, and try again. There will be times when you’ll be frustrated…I think that comes with the territory of being a mom. 🙂
Jolon,
I so appreciate your comment. You are so right. Special needs – well, we all have them. Me included. At the same time, it is helpful to have people understand the “special struggles” and blessings that we deal with in our family. Life is such a complexity.
So nice to have others in the blogging community to share with and grow with.
My brother has cerebral palsy. I know “specials needs” is an all encompassing term and each case is challenging in its own way. I also know he is a “normal” sibling to me because he’s the only brother I have. I know no other reality. I wouldn’t trade him for anything. He’s such a blessing to me, just like your son is to you. 🙂