Roughest month of my life :(

[pixxie1232001]

This is my sons story and I hope you can all share your children's stories as well. My middle child has always been a little different. He never really crawled, he never really talked, mostly babbled, and just in general never showed really interest in anything besides music and being alone. Well fast forward to today, he is 2 1/2 and just a loving little boy full of smiles and laughter. But he still isn't talking. When his 2 year check-up came his doctor expressed concern for it, but I told him he was just a late talker (even though he only said mama and dadda, but just for the sounds nothing else). I shrugged off his other I guess you can say abnormal behavior as being normal for him because that was how he had always had been. After finally reaching 26 months with no progression at all, in fact he had stopped saying mama and dada all together, I reached out to a organization for answers and help. They came out and did their evaluation and agreed that he was a late talker and needed speech therapy, great that is what I wanted, but then they hit me with a bomb shell I never thought I would hear, they said he exhibited a lot of the red flags for Autism Spectrum Disorder. I was shocked as was my husband and we actually got defensive with the worker about the speculation but after she left we did research, and found he did fit a lot of the red flags and always had. Since the initial intake appointment, it has been evaluation after evaluation after evaluation. Each came, played with him, talked with me about their concerns for him because of his behavior and addressed their concerns that he had many of the red flags for autism. Finally, he was assigned a case worker last week. She called and said all the reports were done and was going to mail me a copy of each evaluation. What I got in the mail broke my heart. His speech was comparable to a 10 month old. His congative learning 13 month old, and his motor skills were that of a 18 month old....he is 27 months. I cried. I cried for him and me. He looked at me and he smiled and he laughed his cute hearty laugh, and I smiled. I learned in this last month, with all this, that no matter what they say he has, he is still my little boy. I love him to death and I will do my best to give him all the help he needs. He starts therapy on the 1st and 1 more appointment to meet his new speech therapist. They want to do therapy 5 days a week for 2 hours a day. Next month he will be formally evaluated by a psychologist for Autism, to either rule out, or confirm, what we have pretty much been told this whole last month. While this last month has been a hard journey for me, I know it is only start.

How did everyone else find out about their child being Autistic? Did they exhibit any red flags?

 

[Tiff]

Oh hun. I could've written that myself, it was SO hard for us.

We didn't think anything of Claire's delayed speech either and when she was flagged for it we (again) didn't think much of it. I just assumed she was a late bloomer in that regard and she'd talk when she was ready to.

Then when she went for an assessment with a speech pathologist and occupational therapist they mentioned Autism. We did the same, got very defensive and even though its unfair of me I still really dislike her original SLP for mentioning it in the first place.

The reports that we got (and still get) are devastating to read. Claire developmentally is around a 3 year old (she's 4.5) and her gross/fine motor skills are in the 9th percentile. She has trouble forming words and tends to just babble to herself unless she's demonstrating her echolalia. Its heartbreaking! Especially the older she gets and I see just how different she is from other kiddos. When she was younger it was kind of easier to not see per se, because there's so much growing and developing they do.

It wasn't until we did the More Than Words program through the Hanan Center that we started to realize that the SLP and OT were right about Claire having Autism. We took her to psychologists and had her assessed but because of her age (3 at the time) they wouldn't diagnose her. Not getting a diagnosis was hard because it denied us much of the help and funds we needed for her.

She was scheduled to do her ADOS last October then the week before an appointment through Children's Treatment Network opened up. We took her there and they did the MCHAT and she actually scored as severe. IMHO, she's not severe but she reacted so badly to the testing that they had to stop part way through.

Claire's flags were hand flapping, toe walking, limited speech, inappropriate play, didn't do regular eye contact, no sense of self, echoalia, extreme emotional outbursts and inability to have routine changed. Sensitive to loud noises too.

 

[pixxie1232001]

Tiff-Thank you so much for your story. Most of your child's red flags are the same as my Tom's. He does the have these crazy emotional outbursts that leave both my husband and I so frazzled. It happens most when he wants something and when he wakes up from his naps. He will just sit there and scream sometimes for 15 minutes, other times longer. By the time he calms down we're all so emotionally drained we just don't know what to do anymore. He also hates to have his routine changed. Every time I try to change his routine I get screamed at and he again gets frusterated. You should had seen how bad it was to change his routine for when he goes to daycare for his evaluation, he again stood at the door and just screamed at me! It is so heartbreaking cause I want to see him happy, and I can't make him happy no matter how hard I try. I do not know what he wants, or anything. It is a guessing game with him. I guess the puzzle piece really fits autism because everything is like a puzzle with them, you are just trying to find out what piece will make them happy and what will set them off.

Btw he had all those signs now that I think about it.

 

[Tiff]

I found visual schedules really helped with Claire, when she could see what was going to happen it alleviated a lot of her stress about it.

Also First/Then boards worked wonders as well. If you Google, you'll see what I'm talking about. They're well worth it!

 

[sun]

My son is 3y8mo and under ongoing evaluation for high functioning ASD. He was diagnosed with GDD (global development delay) at 18mo. For us it was a bit different because it was apparent from a young age that he had physical issues. He was late on all physical milestones (crawling, sitting and rolling at 13mo). He couldn't hold his head very well even at 6mo or so. The thing that we encountered at first was that he was a (late) preemie - born at 35+6 - so lots of his delays were initially blamed on that. We were on board with it at first, but it became apparent that it was something more. They eventually found that he has hypotonia (low muscle tone) and hypermobility of his joints which contributed to his slow physical development. He also has a speech delay which is exacerbated by the low muscle in his face/tongue. So for us it was something we were looking at and possibly expecting from a young age. However in the past year (since around 2.5) he has really done some amazing things! He started speaking around then and talks quite a bit now. He is hard to understand and has problems with lots of the sounds, but it's just amazing! Before he was speaking we used picture cards and signing.

Red Flags for my son were/are:
hypotonia (more common in children with autism)
lack of eye contact (this is improving)
obsession with switches and doors (this only was really apparent since having my daughter who has a normal toddler obsession)
doesn't like to be touched unless he initiates it
sensory issues with food and around mouth
high frustration and intense behaviour at times (though that's pretty normal in a toddler lol)
often doesn't "hear" me so I will get his attention by touching his face
doesn't understand personal space (only really noticing this now)
likes to flip all chairs upside down

His fine motor skills are good and not behind at all.

It's so hard about the red flags though. Lots of them are pretty typical of toddlers, but I would say that with my son there is a sense that he is not seeing the world the same way as other kids (and not in the way that all kids are different). I'm still struggling to relate and bond with him in many ways. He was my first so some things weren't as apparent until my second was born. She's 20mo now and my partner and I really can see the difference in how they understand and process things. But regardless my son is an amazing little boy! He's smart, funny and lights up my life. I wouldn't change whatever it is that makes him who he is - be it autism or something else. Also I found that by volunteering with the treatment centre I was able to meet lots of other parents and other amazing kiddos. We also got loads of classes, therapy, and resources from them that have helped us daily. Lots of hugs! xx