Our Special Needs Journey

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Our Special Needs Journey

By Lisa Scarbrough

When you’re pregnant, everyone tells you your life is going to change. You know that, but are thankful for the nine months you get to prepare. However, there is no instruction manual given at birth, and you are on your own, save for all the wise and knowledgeable people who are so happy to share their wisdom and advice without you even needing to ask.

My son was a miracle for me, despite all the complications with the pregnancy and postpartum. Every moment I held him, I knew that he was a blessing. I took great pride with every milestone, dreaming of the grand future he has before him. So when his daycare teacher told me at nine months old that he might need to be evaluated for developmental delays, I was a little taken aback. He was my perfect child, how could anything be wrong?

As it turns out, that first conversation was the best thing to happen to us. Six evaluations and nine month later, our son was officially “developmentally delayed” and identified as having Sensory Integration (SI) Dysfunction. We’re on a different road than we set out upon, but now have the knowledge and resources to do the best we can for him. I’m hoping that sharing our story and how we found help can be a resource for any parent who has been wondering about their child but may not know to take the first step.

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1. Accept that there may be a problem. When I was pregnant, I had 36 (at the last count) friends on Facebook that were also pregnant and having babies. In following their child’s progress, I sort of compared where my son was. I knew that children don’t all develop at the same rate, but having my son’s teacher notice he might be delayed was a key indicator we needed to seek help.

2. Seek help. This is probably the hardest part. Where do you find help? Luckily for us, the daycare was able to point us to Babies Can’t Wait, a state-run and funded program in Georgia for early intervention for infants and toddlers. The initial evaluations are free, and the therapy sessions are done on a sliding scale based upon income, so most services are low-cost or can even be free. As part of Babies Can’t Wait, my son will transition more easily into the PSI (pre-school intervention) program with our local school system at age three. So check to see if your school system or state offers a similar program. You may also talk to your pediatrician for referrals to specialists.

3. Start reading. There are thousands of websites and magazines available online to read on most any development delay or special needs diagnosis. Something Special Magazine is one of my new favorites. Books are also easily found on Amazon or Half.com. One of the best recommendations I got was for the book series, Your Out of Sync Child. It really helps to read what other parents have endured and get recommendations.

4. Find some support. As a working mom, I found that there are next to zero support groups available. Most all MOPS take place during work hours, and even fewer special needs support groups are available on my schedule. So I turned online. While I did find a few message boards, I found the greatest support when I finally opened up and shared my son’s story on my Facebook page. Messages poured in, and, as it turns out, one of my friends from my early childhood has a son with the same dysfunction. Now I not only have a safe way to vent, but can also learn other things to do to help my son and my family cope.

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5. Take time for yourself. This is probably one of the best pieces of advice I’ve been given. Being a parent is stressful enough, but adding special needs increases the stress. We try to keep the balance between parents, and don’t hesitate to call on the grandparents when we know we need a good break. We leave a very detailed list of our son’s routine and needs behind to try and make for an easier time for whoever gets to babysit.

6. Have hope. So much more is known about special needs children than it was 20 years ago. One of my support people was telling me about her 27-year-old son who has SI dysfunction. He has graduated from the top of his class at a prestigious college and lives on his own, though still can’t stand brushing his teeth (a common symptom of SI).

Remember, you are not the first parent to deal with a special needs child, and you won’t be the last. Take advantage of all the resources available to you, and one day, you could be the one giving the advice and comfort to a parent in need.

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Reader Comments:

54321

Lisa is one of the strongest, no, she is THE strongest woman that I think I have ever met. Her dedication to everyone around her and especially her son gives me hope for the future of all children. I only hope that through her tireless- ok, her exhausted efforts and absolute unhindered love for Ian shines a light on the increasing issue of child autism and it's cousins and encourages parents to take a second look at their children instead of giving up on them...

By meredith mcpherson on June 15, 2012

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Thank you for sharing and I completely understand! I joined and help with a support group in Effingham County. We keep each other sane. We get all the kids and siblings together for sports and other activities. We take anyone regardless of disability. If anyone is interested please check out our website at effinghamcountynavigatorteam.com and like us on Facebook. God bless. Angela Jackson

By Angela Jackson on June 07, 2012

54321

your son is so bless to have a mother like you. may journey of motherhood be filled with love and kisses.

By benita wheeler on May 23, 2012

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My grandaughter is 9 she is high functioning autistic. Her dad(my son) died in an auto accident when she was 3 1/2. She lived inour home since birth so I was able to see her regresion which happened before her dad died.That was at about 2. A cute thing she said one day was in my room was a magazine with Paula Deen on the cover she came running to me and said hey mom its your friend that we watch on T.V. She and I bake a lot together she loves it. She loves the cooking shows also especially Paula's I raised 3 boys so Paula and I have a few things in common. Oh my boys can cook real well.

By Stephanie Buller on May 10, 2012

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Hi LIsa, I wish you the best of luck with your adventure! I am a special needs teacher and my students are amazing! I will look up the online magazine that you mentioned.

By Mindy on April 26, 2012

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I read your story and I can relate to it. Although, my son will be 35 this year. I must say things have come a long way since our child was born. Internet was not even thought of and finding someone to share our experience was only by chance meeting someone in the doctors office that was willing to talk. I will say one thing people have no idea what you go through when your child is sick. My son had a very long road and by the time he started school they were by no means ready for someone that might disrupt their class with a disability. I am so glad that things are now easier and much help is available. I will say one thing before I close when people ask you whether you are having a boy or a girl answer them I am just praying for a healthy child. sincerely yours, Kim and my most cherished son.

By KIM ROME on April 25, 2012

54321

I am also the grandmother of a Special needs child. Sorry to say, that we did not realize that J.J. was not hearing well enough to learn to speak correctly. They kept telling us that he was to young to test. When he was three, we started talking to people to get him tested. His father being in the military, we just got him started when they were transferred to another post. My daughter started all over with different doctors. We were told that he has OMD. He is going to a speach teacher three times a week and is speaking better. When he first moved away, he got mad if I did not understand what he was saying on the phone. My husband and I have always said that what ever the first grandchild wants to call us it will be what all the others will call us, so instead of Grandma and Grandaddy, we are called Bubba and I.E because that is what J.J. heard when we told him who we were. So Much Love from Texas Grandparents and God Bless.

By Anonymous on April 24, 2012

54321

Hello, Lisa, Thank you for sharing your experiences with your young son. May I offer you a word of encouragement from the "other side" - not a parent, but one who lives with a so-called "disability?" I was born in 1952, with a form of cerebral palsy, long before "mainstreaming" was even discussed, let alone common. Thanks to parents who refused to accept the "status quo" of the day, the help of a good Easter Seal program in the town where I was born, and a loving older brother who has always been encouraging but would NEVER take any "pity-parties" from me--I attended regular schools, graduated in the upper third of my Senior class, and in the top fifth of my College class with a BA in Russian Studies. I've worked for over 30 years in various data/telecommunications and computer manufacturing businesses. I'm married -- and I just celebrated my 60th birthday! Encourage your son as much as possible to live his life, warts, lumps and all, just as you would a "normal" child! Certainly you will provide the extra training/assistance/medical care, etc. where it is needed, but resist the temptation (or the well-meaning influence of others) to allow the "problem" to become your son's "identity." God Bless!

By Karen on April 22, 2012

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Lisa, You are and always will be an amazing person to me. Ian has the best Mom in the world! Thank you for sharing your journey with us and for being a wonderful friend.

By Rose on April 21, 2012

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Lisa not only have you given great advice to us moms, but you have met the problem and dealt with it. A lot of parents take years to come to the conclusions that you have. Working in the DD world is a unique experience, but you just put it all into perspective. Especially, the taking care of yourself part of it. YOU have to take care of yourself and you should never feel guilty about it. Your son will grow up to be an amazing man because he has a mother who puts her son before herself in so many things. I admire you. I have to go now though because there is a fly bugging me to DEATH smile xxoo

By Jess on April 21, 2012

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This is a very inspiring story. Thank you for sharing with all of us.

By Ann on April 21, 2012

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What a amazing blog Lisa, thank you for sharing. Please know even though the miles between us maybe long you will always have a friend in me..

By Andrea Lepinske on April 20, 2012

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Lisa, thank you for sharing this journey with us. Your practical advice is sure to help many others. Take care.

By Elizabeth on April 20, 2012

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Thank you for sharing your story!

By Ivy on April 20, 2012

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It takes a great deal of strength to walk this walk and even more to share your journey with a host of strangers. Not only will your son reap the benefit of having such a strong advocate, but others will read your story and be encouraged and enlightened and their children will prosper as well. Wishing you many blessings as your quest continues.

By Cindy Bogan on April 20, 2012

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Thanks for sharing your story, wonderful article!

By Pixie on April 20, 2012

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Lisa, Thank you for sharing this story. I know that it will inspire and help so many parents. Cindy

By Cindy Edwards on April 20, 2012

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Thank you for sharing this blog post... Sharing your story is a wonderful way to help others:)

By Candace Thornton on April 20, 2012

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Thank you for being so open and honest about your journey! I hope with the article other parents will know they are not alone.

By Tanya on April 20, 2012

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What a wonderful written blog Lisa! You have an amazing strength, and I hope that this can help other parents cope in a positive manner.

By JoDee Smith on April 20, 2012

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