Just as in the typical population, IQ is only one way we measure intelligence. Having a lower IQ - for anyone - does not mean that someone cannot learn. What has been seen is that low expectations are what yield low performances more than a lower IQ. ANYONE not given the proper tools and support or a home & school environment that expects very little out of them will result in someone with significantly less ability to do anything. Thankfully, Grant was born at a time when we are learning that individuals with Down syndrome are functioning at higher and higher levels and can achieve great things because of better early intervention, education, health care, higher expectations in the first place, and social acceptance.
Grant with in-home developmental teacher (1/08)
The typical educational path for those with DS begins at a very young age. Almost from birth, Grant has received intervention services in-home and in center-based programs. Physical therapists, occupational therapists, speech therapists, and developmental teachers are just a few of the people Grant and I commonly deal with in his everyday life. Most services are done in home during the younger ages where available (sometimes we had to go to the therapists' offices) and when Grant turned two, he transitioned from more in home stuff to a therapy-based school. This past year, he has been at ECF (Exceptional Children's Foundation).
getting speech services at ECF (6/08)
When he turns 3 (in just a few days!) Grant will transition into our school district to provide his services. He'll attend a special day preschool for part of the day and we've been looking at different programs trying to find one that will be appropriate for him. I've attended something called an IEP meeting (the first of many, many, many-stands for Individualized Education Plan). I'm not entirely new to IEP meetings having been a teacher before Grant came along, but I can tell you it's MUCH different from this side of the table. Also the IEP meetings I was in didn't involve a child with quite as many educational goals and needs as Grant. I'm learning very quickly that no one just gives you the services you want for your child just because you want it and ask nicely - you have to fight and make your case for every little thing. This transition stuff is an adventure - and not a very fun one either, but I'm getting off topic. At age 5, he'll transition into kindergarten and go through each of the school years like everyone else, but with regular IEP meetings to make sure all his individual goals are being met and help given is appropriate.
Any services that can be squeezed out of insurance, local agencies, and schools are necessary because development in a child with DS is nearly always delayed. Of course, each child is unique and some may reach certain milestones earlier or later than others, some may even achieve certain skills at the same time as their typical peers. But the delays are common enough that almost all kids with DS will automatically qualify for services. Here's a quick comparison (these are just approximates):
Rolling over - - Typical child: 5 months *Child with DS: 8 months
Crawling - - Typical child: 8-10 months *Child with DS: 12-15 months
Walking - - Typical child: 13 months *Child with DS: 24 months (Grant was even a bit delayed in this...but he's WALKING NOW! Have I expressed my excitement clearly enough? Seriously, this kid walked all over the mall yesterday!)
Talking/First Words - - Typical child: 10 months *Child with DS: 16 months (we're just starting to hear the beginning of words with Grant, though he's been making lots of noises for some time)
Though Grant has been quite behind in some milestones, he has excelled in other ways. In fine motor and cognitive skills, he's doing awesome - it's as if his brain and body focused on that for a time and now he's getting back into the larger, gross motor stuff. We have never been disappointed in Grant's slightly-slower progress - we expected it and have actually found the opposite to be true. Since he works so hard to do things, we don't take them for granted and we celebrate big time around here.
We've also learned a valuable parenting lesson: every kid is different. It's okay if your child doesn't do everything perfectly on time. As long as you are doing what you can to foster their growth, they will get where they are going eventually. Thanks to Grant, I think we'll be a lot more appreciative of new Baby Bastow's relatively-easier progress and a lot more laid back if the baby down the street rolls over a month before our Baby B does.
* * *
People with Down syndrome and their potential have been underestimated for years. To speak with a doctor not updated in current achievement levels of those with DS is to speak with someone stuck in the 1950's. It's only been in about the past 30 years or so that people with DS have stopped being shoved into institutions and forgotten. It is so important for parents to find doctors and other professionals with information about Down syndrome with all we know NOW-in 2009.
Just days after Grant was born, when the karyotype came back to confirm that he did have Down syndrome, we spoke with a "renowned" and "experienced" geneticist at UCLA (where Grant was staying). Among many of our questions were ones that I - a previous teacher - were concerned about - reading, writing, and academic achievement. I'll never forget how so point-blank he told me that Grant would never read and 'never write his own name'.
For the second time in days my world came crashing down. I'd always pictured this baby reading books with me and then, someday, to me. He would hopefully love books like I do and do well in all areas at school. Yet even as I sat there stunned by what the "expert" told me, I knew he just had to be wrong. After - literally - just two minutes of research on the internet, I found tons of evidence that what he said was simply not true (although it may have been true in the 1950's or 60's). There are many programs that exist to help those with DS read and in fact, reading was considered a big strength in comparison to the other subjects. His new special preschool will also do so much with him to get him started on his letters.
Will Grant definitely read? What level will Grant read to? I can't answer that for sure yet, but I know that many, many children with Down Syndrome learn to read and write and do it well. They just need to be given the expectation, the opportunity, and the tools - just like any other child. Now what bothers me even more is that this "renowned" genetics doctor is out there dispensing inaccurate information to surprised, vulnerable parents (not to mention that he was quite cold and sometimes even crass when we asked him questions). Suffice it to say, we never talked with him again and see a different geneticist occasionally that we are much happier with.
Someday, as soon as Grant is able to write, I plan to write a letter to good 'ol Dr. C. at UCLA. I plan to tell him of Grant's achievements (I could write quite a long letter about that now) and at the very least, Grant will sign his name at the bottom of the page.
* * *
Grant doing a little light reading at Grandma's (11/07)
Grant is such a sponge right now. He loves books and can use his shape sorter so well. He's a whiz at those wooden puzzles and is so observant. He's learning things and figuring out things right now at such a fantastic rate - it boggles my mind what he might be able to do in just a few months from now. Heaven help the person who tells me that Grant can't learn or that he won't learn very much (actually, whoever tells me again - I've already heard it once). They'll have to sit and listen to everything you just read, but it will be in person and I'll probably have a stern look on my face.
Though I know Grant is capable of so much, the real lesson I've learned from having Grant is that 'intelligence' is really just numbers or letters on paper - not nearly as significant as being a curious, engaging, and hard-working person. I hope all my children do well in school and are successful, but having Grant has changed what "do well" means. As long as all our kids are putting forth their best effort and striving to learn & improve - and we the parents are doing all we can to support and help them - then it won't matter if on paper they are the valedictorian or not.
You'll hear me express this over and over - people with Down syndrome can do just about anything they set out to do. They are capable of so much. Even harder than overcoming their own initial abilities in pursuit of these goals is overcoming the stigma that society has placed on them for many years. Slowly but surely, we are coming to a realization about this and providing the support to help them become successful, fulfilled adults.
(though please don't grow up too soon Grant - I really enjoy your sweet littleness!)
Yes, that was a tad more reading - but you made it! *Tomorrow: Medical & Health Concerns
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