Armed with a small, soothing musical toy to which Nik has lately gravitated, chewy tubes, goldfish crackers — and a ready excuse to make a hasty exit with a small boy who had not napped — we set of to explore this new horizon. While I can’t say it was a perfect evening, it wasn’t anywhere near the disaster we had prepared ourselves to face. Other than an early incident of Nik, um, “watering the floor” when we changed his pull-up, there were no tantrums, no wild racing around the room in search of things to throw, no episodes of head banging.
In fact, Nik was quite content to play with the large number of developmentally appropriate toys which belonged to N’s little sister, S. Nik spent a great deal of time playing with a shape sorter (his favorite non-musical toy, I think), some small cars, blocks, and pushing around S’s little shopping cart. Ever the inquisitive clown, Nik tried to get into the shopping cart with less than stellar results; one must give him credit for knowing when to give up the fight.
The gathering was an eclectic mix of adults and children —mostly co-workers of M’s husband, who is in the Air Force, and their children ranging in ages from 16 months to 10 years old. Things were very low key; the kids all played with whatever toys they wanted to while the adults socialized. Being the only non-military family there, we felt a tad awkward at first but Nik took care of that by grabbing the hands of whomever was closest to him to clap; like his Nanny, Nik’s never met a stranger he didn’t like. Every so often he would disappear up the stairs and one of us would have to chase him to keep him out of mischief.
Nik and N were in school together a year ago. In fact, the last time I saw N and his family we had not yet pulled Nik from school. Nik was on the verge of walking and N was in the process of getting his Dynavox. It was an exciting time for both our families.
I was eager to see N’s family again; his mother had been one of the only mothers to reach out to me when Nik started school. Her friendship made the struggles of adjusting a little bit easier. I was anxious to see N in action with his cool Dynavox —the one his mother jumped through hoops to make happen over the summer —and to hear about the progress N has made in his new placement in a smaller class —roughly a third of the size of the preschool class he had shared with Nik. I was excited about showing off all the changes and progress in Nik, too.
Nothing was as I expected; I came away feeling very sad for M and her son. It turns out that the school has not only not hired a new speech therapist to replace the one that left in the beginning of September (after taking off the entire summer, too), but they had not told any of the parents about it. Poor M was nearly in tears when I asked about N’s Dynavox and how it was going. It seems that no one is using it at school and there is no consistency from school to home so N has regressed to randomly touching buttons to hear the sounds and has not made progress toward developing any meaningful way of communicating.
Niksdad and I both started to give M some coaching about what she could or should do but I could see that she was just too overwhelmed to take it in. In addition to her sweet son, N, she has a spitfire little girl of 16 months old who runs her ragged. On top of that, she is a military wife —which is only relevant because her husband is being deployed to Iraq in less than three weeks. He will be gone for six months as he coordinates and runs transport operations for daily troop movements. To say M is anxious and hanging by a thread right now would not be an understatement.
I feel so bad for her and want to try to help in some way. All I can offer her is compassionate understanding and information. I truly think that N is somewhere on the spectrum. (As many of us often remark, “We recognize our people.”) He is sweet and docile, completely non-verbal, perseverates to the extreme over any and all wheeled transportation —to the point of nearly being hit by a car on several occasions because he was so absorbed in watching it that he walked into the street to get closer —and he has significant oral motor issues with lip closure, drooling, and tongue thrusting. His gait is incredibly uneven —it has actually been described to me as a “Frankenstein walk.” I say I think he is on the spectrum because he has not been diagnosed with anything like cerebral palsy or any genetic disorders.
Yet N has never been evaluated for autism, let alone diagnosed, by either medical or educational professionals. This is, to me, the greatest travesty. Here is a child who can program his neighbor’s television remote to translate into French but who cannot communicate in a way anyone else —including his parents —can understand. Who clearly understands what is being said to him and responds more or less appropriately, yet no one at school has ever suggested that he be evaluated for anything beyond his current classification of “developmental delay.” I suppose I shouldn’t be too surprised; if he is placed into an autism program the school loses the funding they get for warehousing him five days a week.
On some level, I think, M knows this, too. N’s IEP is coming up next month and she hasn’t the faintest clue about what is in his IEP and how to advocate for what he needs. I think she is afraid to look too closely because she doesn’t want to see what is right in front of her. M did say she really wants to get N out of his current school; since they moved he is eligible to go to a different school in another district. I urged her to lobby for the change of placement immediately.
I feel so sad for N and his family who don’t know what to do for him. And I feel such a profound sense of relief and comfort with the choices Niksdad and I have made for Nik. There but for the grace of God…
Knowledge IS power.
There is a big to-do here in Virginia, where “developmental delay” is going to be yanked as a special ed category after preschool. Basically, unless this poor lady got him diagnosed with something, Virginia would kick this kid to the curb, because there would be no category to place him in!
We’ll be praying hard for N and his family. If there is anything we can do to help, too…
Glad the party went well.
Thinking of you
Smiles
Glad to hear Nik did so well at the party.
As for the “watering the floor” we had SB’s birthday party here today and let’s just say more than one little boy must have done some watering in our bathroom.
The story of N and his family is just heartbreaking. In Maryland the developmental delay coding is no longer an option after preschool. Hence our incredible relief (??not the right word, but you know what I mean) when SB qualified for the autism coding at his IEP two weeks ago. I hope N’s parents find the strength and support they need to help their son.
So glad the party went well for Nik.
The story about N is so sad. He deserves so much better from the school. M is understandably overwhelmed right now, but hopefully she will approach you and Niksdad for some pointers and coaching in dealing with the school. I’ll keep them in my prayers.
Oh, that is a heartbreaking story. What a traumatic time that family is going through.
Despite all of that, I was happy to hear about how well Nik did at the party!
So happy to hear that Nik did well at the birthday party. Those birthdays can be, um, shall we just say, difficult?
Sorry, though, to hear about your friend. How overwhelming it must all seem to her. I’ll keep good thoughts for her.
Yes, Niksmom. We know our people.
So many feelings over this post; joy at Nik’s managing the party so well, and sadness over this other child who really needs some help. And the parents.
My army is at the ready.
I’ll talk to the students on Tuesday, when we return. You know what I mean.
The shape shorter was a favorite around here, too. Bravo to Nik for a good evening out and what’s a little floor water…..
Not that it is relevant here, but Charlie’s big regression happened when he was around 7 years old—-communication skills, self-help skills, all kinds of things faded away. Nonetheless, the lack of a speech therapist (for special needs kids?) and the seeming lack of effort on the part of the school are alarming. Perhaps slow and steady and persistent suggestions might help for N?
Good to hear Nik enjoyed the party.
You are so right, knowledge is power.
One word-ADVOCATE.
As you so quickly deduced, M is in no place right now to absorb, process, and make the right decisions for N.
She needs to invest the money in a good local advocate to go review the current IEP, do some observation of N in school and home, and assist her in formulating new goals and getting the school to deliver.
Going in and just asking for a new placement will not work. As you know, the system is not set up like that. The findings of the team and the goals that are set determine what is an appropriate placement.
Advocates cost money, but good ones are worth their weight in gold.
Joe
p.s. Good for Nik on the party.
This is a situation where a diagnosis is needed and fast. We were in similar situation with M. Without a diagnosis from a doctor some schools can’t do much to help. How frustrating to see a friend going through all this and ahve your hands very full on your own. I hope that maybe you can call her or get together and maybe give her a few tips on dealing with the schools. She sounds overwhelmed and tired. I can’t imagine dealing with all that and a husband going off to war at the same time.
I am glad the party went well for Nik! That is great.
i feel so sad for your friend, M and what she is going through in not getting the help and support she needs for N. such an overwhelming time with another child at home and her husband about to go away and the school not coming through in a consistent and appropriate way for her N.
maybe a follow up conversation with her? when it’s not at a party with all the overwhelm that can happen for any of us in a social situation? just sharing your experience, strength and hope may go a long way toward giving her some renewed energy for her own journey ahead.
That is a really sad story. I’m so sorry for your friend. There’s so much you have to know to get what your child needs. It makes me really nervous.
I’m glad Nik had a good time at the party though!
I second what Kyra said. Bring it up again – offer your help. Has anyone ever said she needs to ask for an eval for autism? It’s beyond me why the school hasn’t thought this up yet.
Then offer your help some more. I can imagine she can only handle so much right now. SO glad Nik did well at the party – that’s a cause for celebration!
It’s so hard being so overwhelmed with things, and not being able to advocate for your child. I know, I have been there. If it weren’t for my sister who is helping me right now, and is a second mom to my kids, well, I don’t know where I would be.
I have so much going on with Rhett, Dakota, and Andy I just can’t do everything all the time, and one of my kids eventually gets left out. I can’t imagine what M is going through knowing her husband is going off to war.
I hope she gets the help and DX that she needs soon.
As for Nik…..Way to go on doing so well at the party!! Woo Hoo! Here’s to many more!
In my experience, the school didn’t want to mention AUTISM. I kept bringing it up though. Finally I took matters into my own hands and went to my dr. who sent me to a neurologist. But reading blogs, and advice from other bloggers, (Melissa, Conor’s Mom) helped me to know what to do next! It was scary. But atleast I had answers.
I’m sorry to hear about your friend’s struggles. Learning to advocate for your child is difficult but necessary. A very wise woman told me at the beginning of our journey, “If you don’t advocate for your child, who will?”
Glad the party went well!