A few months back (November to be exact) I shared my story...or rather my son's story. He was diagnosed with sensory processing disorder. The days since that post have been up and down. Today was been a tough day. We are trying to prepare for his transition into grade 1 and I have spent more time on the phone being passed around with no definite answers and all the time my questions are increasing. There is speculation that his "condition" may exist with another--aspergers, autism, ADHD etc . We have yet to determine that exactly but have unveiled an anxiety disorder very recently. The path ahead is long. And the journey unbearable at times...but we do it out of love. Honestly, we would do anything for him.
After my day, I have no card to share with you today...just a few thoughts. Hug your children and family and be grateful for every moment...including the tough ones.
24 comments:
Hi, I just thought I'd leave a comment and say that I understand what you're going through. A few years ago, I knew that something was wrong with my son's development, and after what seemed like an eternity of asking tons of teachers, specialists, etc for help, I finally found out that he had dyslexia and auditory processing disorder. I got little to no help in the public schools and finally ended up in private. After a year in a fabulous school that has been so good to us, my husband has been relocated to a different state! We have to start over looking for an appropriate school for him. Sigh... I feel your pain!
I hear you, baby girl. Ever wish sometimes He didn't think so highly of you? Kaitlin is changing schools (I am NOT old enough to have a daughter in HIGH SCHOOL!) I wanted her to stay where she is so she can be a kid since she's mentally young, but she wants to go to HS with her friends and it ends up they have much better services.
Great samples! Miss you. (I'm working again, eh?)
(good luck to Vera in her search, too)
A friend of mine's son has Aspergers (he's now in 9th grade)and you are right, the path ahead is long, but the good days will FAR outweigh the bad and the joy I see in her eyes every time he accomplishes a goal in something unmatched!
Dear Alli...I'm praying for you and your family....for wisdom for your next steps. My daughter is going to college (Fanshawe in London, Ontario) and is taking Developmental Service Worker and they have an additional 3rd year programme specifically for autism in children. The coordinator of her programme said that the CDN Gov't is putting a lot more resources towards helping families and children of autism. This process for help may be slow but Lord willing it will get better and faster for those needing help.
{{{HUGS}}} Allison and Stephen, we are thinking of you and wishing we could be closer.
I know your pain...you are not alone! Keep your love for him at the forefront...never let a root of bitterness grab hold. Each time I check your blog, I will remember to pray for you. Keep on keeping on.
Sending many hugs and prayers your way. Just keep your eyes focused ahead. Keep in mind all the good when the days are long and tough! Hang in there.~Erica
(((Alli))) Sending prayers and hugs your way. Know that you are surrounded by many friends who care about you!! :)
Just a little note to say I'm thinking of you all, My friend has a son (Stephen)with Autism and against all odds Stephen talks, oftrn repetative and he recites favorite films and the likes but never the less he talks.
My friend get little and sometimes no sleep at all as Stephen can be active most of the night time, now here is the good bit, every time Stephen does something new it is like a miracle we praise him constantly for new things he does, they far outway the bad days and nights, I felt so blessed in November 2007 as Stephen came over to me all on his own and gave me a kiss goodbye as I left their home, that was so unusual as phtsical contact is mostly a no no. I was on a high for weeks.
I truly believe that God chooses which mothers are special enough to cope with children like Stephen. So Ally you must be a very special Mum.
Hugs to you Alli! And though I don't "know" you and your son, I appreciate all that you do for him. With all the bad in the world, it's touching to hear of the efforts of GOOD parents.
Ali, just wanted to let you know that I will be praying for you and your husband as you walk through this.
We are so living what you are going through right now! For me the most difficult aspect of day-to-day life, besides constantly being worried for my DDs and if we are doing the right things, is the attitude that if we discpiplined our children better we wouldn't have this problem. We do discipline our girls but with ways that are more appropriate to their special needs and try to maintain an already fragil self esteem (especially true with my pre-teen daughter as you can imagine.) Please know that my thoughts, understanding and prayers are there with you. Hugs!
I am not sure if it the same thing, but Teri Conrad has mentioned on her blog recently that her daughter has sensory integration disorder....perhaps she's someone to talk to?
http://terriconraddesigns.typepad.com/my_weblog/
Good luck - I try to hug my kids as much as possible. We have challenges too.
Ali our oldest son (now 19) was diagnosed with learning and perception problems when he was young. I am a teacher and managed to use the correct language to get him a TA. As the years went on my DS managed to do much more than was expected of him and now he works full time in a pet store and is totally `normal`. I remember nights/days that are thankfully in the past but at the time were almost too much but it is amazing what love, care, and a demanding Mom can accomplish for her child. You take care of your child...you know what he needs and you speak the language as a teacher. Time will prove that `love conquers all`.
Retired Heather
Alli, your post has touched my heart. I will pray for you and your family. I've had some really rough days as of late and your words of encouragment are a blessing really - and I did just go hug my 2 little boys. Thanks for the reminder to be grateful for it all!!
Hugs and prayers Alli!
I can't even imagine what it feels like... but hope that the future holds many positive surprises for all of you... I hope you'll find help and support that will make this easier for him and you...
my son is going to 1st grade so they must be around the same age...
Hugs... Monika
Alli, I'm so sorry you're having a rough time, but I'm glad that you're so on top of things that he'll get every bit of treatment, therapy, and most importantly love and support that he needs.
Big hugs coming your way. Give a ring or drop a line if you need to chat.
(((((hugs)))))
I must say I know how you feel. My son was different than my other children, then diagnosed as Developmentally Delayed. Then he was tested (took almost a year!) at Kennedy Kreiger in Baltimre-where we live. He has been diagnosed on the autism spectrum, ADHD, OCD, Aniety and Sensory Integration Disorder. So I know where you are coming from. HE was 5-going into the first grade when they finally made hisdiagnosis. It isvery difficult because he is so smart-yet he seems so odd to others. We just had my duaughter's birthday party yesterday and my husband and I were talking last night baout how hard it is for him to "fit-in" The sensory issues can be very difficult for others t understand. He doesn't like music, he cannot work with any background noises. He flips out when my daughter sings-he only likes certain clothes, certain food textures, and truthfully, he'd rather be by himself- nice and calm and quiet. It is very hard and very sad but you are your child's best friend. Read all you can, learn all you can. And please-anytime you need to talk-don't hesitate to contact me. My email address is Littlewolves3@comcast.net
My daughter is 7 and has sensory integration disorder too. Knowing is half of the answer! We understand some reactions she has much better now that we know what's going on or what's likely to cause those problems...
Seeing a psychologist helped her cope with the sudden rages she couldn't control.
The hardest part is that to other people she seems normal so when something goes wrong they assume she's a brat.
Hang in there, there are lots of things that can be done to improve.
I suppose he has an IEP at school for starters.
I can imagine your heartache and frustration, Alli. I've had two sons whose teachers, year after year, told me had ADD and needed meds. You want what's best for your child, but you don't necessarily want what 'they' say is best for your child. No one loves your child like you do, and no one knows your child like you do. My older of the two boys with 'issues' is almost 19 now and is getting As in college, and the younger of the two (just turned 10) is doing much better this year (after much prayer, we started home schooling last August, mostly for his benefit, and he's a different child now for the most part). Just hang in there, pray a LOT, and keep loving your son for who he is. Love is a wonderful prescription and parents are their kids' best advocate -- never give up. I'll keep your family in my prayers.
You are not alone. I know exactly what you are going through? Are you in the US? If so, I wish I had your email address as I could provide you with some info on the US laws on special education. Feel free to email me for info on that or on the issues. My son, who is now 17, is doing so so so much better than when he was 5 or 6. Hang in there and let me know if you want to chat. Joan (my email link is on my blog...)
Alli I'm so sorry to read about what you and your family are dealing with - I had missed your post in November and just read that as well. One of my friends has a son with this same disorder - she has told me a little about it but your posts have helped me understand a little better what she must be going through. My heart goes out to you - you are clearly a wonderful mom and are doing the best you can, I can't imagine how difficult it must be. Thank you for helping educate us about this - it will help me be more supportive to my friend as well.
My son has an autism spectrum disorder and will be going into
3rd grade in the fall. I know exactly what you are going through as far as having so many questions but no one to go to for the answers. All you want is the best for your child but you don't know where to go to get the help you need, and there is added pressure because time is of the essence. Please feel free to email me if you have any questions blueeyedgirl01@sbcglobal.net. I am a friend of Julie Campbell's by the way. I work with her and she was my upline for SU. Keep up the fight! Mary Pickett
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