My baby was 3 years old when he was tested for Fragile X, his brother was 6. We had spent 4 years looking for some kind of reason for the delays we were seeing, to no avail. When FINALLY, one of our early intervention therapists handed me a book about Fragile X. Looking back I think she must have been terrified to present this idea to me, I would have been. But, I read the book, and she was right, my little boy met most of the physical characteristics......so we went to the doctor. When his test came back positive, "full mutation-mosaic", we breathed a sigh of relief (that lasted about a second). Finally, we knew what was causing the delays, but we also knew there was no way to "fix" it. That was the first real encounter I had with desperation.
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| Rhein and Rhett ages 5 and 2 |
As a parent, you want to find out what is wrong, what hurts, why...... and then fix it! Our older son was then tested (since it is genetic) and we found out that he too was positive "full mutation mosaic". The doctor was totally honest with us, he told us he knew almost nothing about Fragile X and sent us on to see a genetic counselor. This was 11 years ago, the internet wasn't brand new....but it was a little harder to find and access information. I remember my husband, myself and our 2 boys driving all the way to Kansas City to meet this genetic counselor. She walked into our room, pulled out 2 pages printed from the internet and began to READ THEM TO US! She could not answer any of our questions, I had already read every bit of information available.....I just wanted someone to HELP us! She did suggest that my entire family be tested, as I was the first grandchild on either side of my family to have children and extended family should be made aware of my carrier status. I was fuming mad the whole way home. I guess that is the first time I realized I would have to learn what treatments were out there myself.
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| Rhein and Rhett the month we got their test results |
Then came the school.........before I start this section I just want to say that we have had some of the most caring, most amazing teachers. Those teachers will be our friends for a lifetime. (If my child runs across a room to give you a hug, or smiles ear to ear when he sees you, this section is NOT about you).But, on the flip side we have seen the very opposite of that spectrum......and I can never explain how frustrating it is entrusting your child's education to someone who doesn't "get it", doesn't want to take the time to learn, doesn't want to listen to you as a parent because after all, they are the ones with "proper" training. I'm here to tell you, if you want to see some parents acting CRAZY then please patronize them, make them feel like they obviously don't know their own child because you spend 5 hours a day with them and you read a website about their "condition". For people who don't have IEP's for your child....bless you, and I pray you never do. I pray you can live in the blissful reality that you will send your child to school and he/she will learn what they are supposed to, you have to check their bags, do some homework, and attend a conference twice a year to hear how well your child is progressing. Just so you can understand a different prospective, let me explain an IEP to you.
An IEP is an Individualized Education Program. The idea is that parents and teachers work together as a "team" to provide the child with the best possible education. It sounds GREAT.......I assure you it is not that simple. First of all teachers in special education are TOTALLY overworked, their classroom is filled up with 15-20 (sometimes more) children with special needs, and completely different learning styles. Sure they probably have an aid (para).......but what in the world can one or two paras do with 15 kids? Sure, they can help to shoulder the load. But, anyone who thinks that is a sufficient staff to truly give each child an individualized education.....has never stepped foot into a special education class room. In the beginning, I so badly wanted to believe in the system. I wanted to BREATHE...I wanted to send my child to school and trust that the staff was doing everything in their power to teach him what he needs to know to improve, advance and succeed. But, right out of the gate we were bombarded with things that he CAN'T do, not only can he NOT do these things, but after reading material I sent or looking up things on the internet, it was sometimes decided that he would NEVER be able to do these things. So, reading? Sure he goes over it in the classroom, but he will never be able to read so we will just work on singing the alphabet song. Writing? Well, this will be very difficult for him, but he won't need to learn it because he can type, we'll teach him to do that. If you want to see a mom go completely BALLISTIC then PLEASE tell her all the things her child can not and will not do. Better yet, if that mother has always had a rebellious personality, she will prove you wrong. So, school went on for him like that for a couple years....thank goodness we had an amazing speech pathologist who honestly kept me going and held me up through those first years.....she gave me the strength I needed to believe in myself and my child. Our lives would be completely different if we had not had her.I taught him to read during the summers between Kindergarten and First grade and then worked again between first and second. Finally in Second grade we had a new teacher for his resource room, and sure she can be stubborn and she's been in the field for a LONG time, but the difference? She listened, she learned, she respected us as parents. She asked the school to order the reading program we had been using at home, FINALLY school was what is was meant to be, he was progressing and thriving. I will tell you though, this entire process made my husband and I less than trusting, we were combative and defensive, we went to every IEP meeting guns blazing ready for a fight. We would finally get on the same page, and then there would be a school transition, or a new teacher.
Just an update on the outcome of this child who would never read, or write. He is now 17, has amazing teachers at the high school, has a drivers license, bought his own car with money he earned mowing lawns, he reads at about a 7th grade level, he has a job at the local newspaper and he has his own checking account, which he beautifully signs his name on every check he writes.
What I learned here? NEVER let a diagnosis, or a synopsis of a diagnosis define your child.....he is so much more than that.
Now, luckily....because we had been down the path with our oldest, we never bought into the hype with our middle child. We demanded materials and programs for him...he has gotten the absolute best of the education system, simply because the trial and error part happened with his brother.
I will only mention Middle School briefly......it is a hard time for every child, learning who they are, trying their best to fit in. I'm not so blind that I can't see it is a struggle for every student and every parent. All I will say about middle school (until my children are done with it and I can write a tell all) is, it gets better. Put your "guns" away, no one will even notice them. High school is just around the corner....my advice for Middle School.....get through it, that's it. Just suck it up, find the teachers who are willing to help you (they are there) and just know it gets better.
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| The best graphic I have ever seen to describe what the "mosaic" part of our diagnosis means. Thank you to fellow Fragile X mom, Lisa Lawrence for sharing. |
High school......a fresh start, new teachers and wow.....people who honestly care what kind of an adult your child becomes. YAY!!!! The best IEP meetings we have ever had have been the 2 we have had in high school. Part of that might be because we have moved past the grief, the broken dreams, and the despair. We now realize, it is what it is......and where do we go from here?
Fragile X....oh yes, the gift that keeps on giving. I am so glad that we had our diagnosis fairly early, I am glad that technology has progressed and we can keep up with current treatments and strategies. I assure you, there is ALWAYS new information. I am most thankful for the support groups that we have, locally, regionally, nationally and internationally. 11 years ago I had no idea the journey we were starting, where it would take us.
There are MANY quotes about strength....some of them make me uncomfortable. I am not stronger than you or anyone else....I am as strong as I need to be, for and because of my children.
"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." ~ Elizabeth Edwards
July is Fragile X Awareness month, my blogs all month have been focused on Fragile X, our diagnosis and how it has affected our lives. Everyone's journey is different, this is just ours. If you would like to learn more about Fragile X please visit this link https://fragilex.org/........if you would like to donate to help families with this diagnosis find resources, treatments and support please visit https://www.crowdrise.com/KansasFragileXLEK15/fundraiser/christinamurphy
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