Treating Dyslexia: There is no magic wand or instant cure. As an optician, I have been particularly interested in improving reading with personalised prescription coloured tinted lenses / glasses. There is a great deal of scientifically proven evidence…

As a parent of an autism sprectrum child who brings such joy to my life I read with great interest the loving of farm animalsthat these kids have. I see it in my own son as he treats the dairy cows on our farm as the gentle bovines that they are. I am always worried about the future for him but in a future world maybe animal husbandry will get the respect that it deserves.

Jerry Grabarek

I’m sorry. I really am – I do know there’s a measure of copping out in this.

Sharon

Sharon

You know those people you meet out and about who can’t quite seem to keep it together, who sometimes seem to just not be too bright? They seem so sweet but they will just lie to your face (although you would never believe it of them until you’ve known them for quite a while)? They might well have fetal alcohol syndrome. Although there is certainly much more education out there than there was 30 years back, we are going to see more of it as people react to stress and disappointment by reaching for the bottle. This will be one of the most grievous losses of the many that we, as a society, face.

Considering how well they manage to function with IQs in the 60′s, I imagine what could have been theirs if their birth mothers had simply put down the bottle. The literature about FAS offers little to no hope for a positive outcome. When they were younger, I refused to believe that would be our fate. I was sure that with enough help and enough interventions, we could tell a story full of sunshine and roses. I was wrong. There is no cure, there is no treatment, there is no medication, no talk therapy. There is prayer and there are few good options. I was revolted by it but I’m seeing the truth in the adage “The boys get locked up and the girls get knocked up”. They are so gullible. So angry at knowing they are different and not knowing how to change that. They have enough understanding of people to know how to lie or comply to make you happy in the short term but not really how to make folks happy in the long term. This is where the trouble starts.

If you met my kids at a homeschool co-op, it would be perfectly safe for them to hold the baby or to play with the toddlers. It would never be safe for them to babysit. It would be safe for my son to split wood with a small hatchet with some supervision but it will never be safe for him to operate a chainsaw (he tried to stop my bosch stand mixer two days ago by sticking his hand into the blender base. He’s 11). My daughters could make you anything that they are already familiar with but one could not follow the directions on a Rice-a-roni box, especially if you needed four boxes made together. They can’t sequence. Yet they try so hard! If my 16 yo bio daughter worked half as hard she would be half way through her masters instead of half way through her bachelor’s. My 15 year old is finally going to move to 6th grade math this spring. If you meet a family with alcohol affected children (or adopted kids who seem a little..off) assume that developmental age is half of chronological age and don’t be concerned that my 15 year old wants to play with your 10 year old. And please don’t be appalled that their kids can’t read at 10, 11 or 12. We’ve found 15 to be a magical age for the maturity needed to master that skill – back to the half the chronological age thing.

You’re right that I do have to buck up and keep being out there with them, in spite of my fears. There will be more and more of ‘them’ as things get worse and if I’m not advocating for my kids and the kids of other folks who either made mistakes at a critical gestational period or decided to contribute by adopting with all the love and optimism and best of intentions, who will be?

I know that I will need my community and they will need me. Perhaps with a little more space (1/3 of an acre in town proved to be a poor choice with 7 kids and 2 big dogs) and a more tolerant community mindset I’ll be able to join in more and opt out less. For much more interesting reading on life with emotionally and neurologically different kids : http://thebodiebunch.blogspot.com/

Steph

I’m the Mom to a medically fragile child who also happens to have an extra chromosome.

I also am the managing editor of 5 Minutes for Special Needs. {http://www.5minutesforspecialneeds.com}

I can’t begin to tell you of the hours I spend in worry about this very subject. Many of us are already looking at this situation as our insurance bottoms out. There are quite a few drugs my son is on that Medicaid won’t cover. His most important drug, Tracleer, runs close to $2,000 dollars a month.

When our private insurance runs out………..then what?

Add upcoming economy issues, and well screwed is a good way to describe how we are feeling.

We did scrape together the money to purchase a generator so that we could keep our son’s oxygen concentrator going in case of an emergency.

I am very open about my willingness to accept any no longer needed medical supplies: trachs, trach ties, trach noses, g-tube supplies that others may no longer need. I am trying to stockpile these with the same importance as we are putting food by.

I am slowly weaning my son off of a $200.00 a box formula (a THREE box a week habit) to being able to use table food via his g-tube. We can just now start doing this as his colostomy has been reversed and his bowels are showing that they do indeed work.

This step would allow me to be able to try and insure an ongoing food supply for Parker.

I’m not above accepting offers of no longer needed Tracleer. My research shows that this drug doesn’t go bad, but instead loses strength. If nothing else I could put this drug back in case of a severe emergency.

Would I do this in a normal situation. Nope. But I wouldn’t consider keeping my child alive in an emergency a normal situation.

These steps won’t totally take care of my son. But they are the best ideas I have been able to come up with so far.

I’d love to see more thoughts addressing this topic, but on a bit deeper level than simply community services and education. For many of us the advice to try and attain a year’s supply of meds isn’t feasible. Especially families who rely solely on Medicaid. They want to keep their kid alive too.

Thanks for all you do,

Tammy and Parker
http://www.prayingforparker.com

Thank you for the wonderful article. As a parent of a 6 year old daughter with Autism Spectrum Disorders, I have long said that you have to celebrate the “little victories”. Early on, I would always be appreciative and happy of the my daughters accomplishments, but in the back of my mind there was always the nagging voice saying “we have SO far to go”. I am happy to say, that I take every milestone, little or big, with GREAT joy. No nagging voice. My epiphany when we went to her IEP meeting at school and they read all of the goals she had accomplished in the last year. When her teacher said what a joy she was to have in her class and how well she was doing both socially and academically, I could have started to cry. What a difference from the comments from her teacher last year.

I took a step back and really thought about what a different child she is from just 12 months ago. There wasn’t 1 big change or turnaround, but little victories along the way and I am SO grateful and celebrate each and every one of them!